Looking for Jeanne’s Endo Blog?

It has moved and gotten a new name. You should be automatically redirected in 6 seconds. If not, please visit
http://chronichealing.com
and update your bookmarks.

12/30/2008

Endometriosis Guest Blogger: One Brave Woman's Struggle Coping With Endometriosis... Melissa Ralston's Letter Of Intent To Do Battle! (UPDATED)

Please meet today's endometriosis Guest Blogger...

Melissa Ralston!




Melissa Ralston is a registered social worker with a degree in social work, psychology and several counselling certificates; a mom; and a fellow endo survivor of 18 years. She has led a Yahoo Support Group called "Goddesses of Endometriosis" for the past 7 years, providing emotional support and educational services on the topic of endo and available treatments.

Melissa started her endo symptoms when she was 12 years old, however despite persistent complaints to her doctor, was not treated adequately for this disease. Melissa did not receive a diagnosis of endo until her left kidney went into failure due to strangulation caused by the endo growths, and had to have surgery to remove the growth. Following the diagnosis, and while she was experiencing early miscarriage after miscarriage, Melissa had seen no less than 7 specialists, who offered no effective treatments other than "having a baby if she were married, but since she wasn't, a hysterectomy could be done". After a failed round of Danazol, followed by more birth control pills which never helped, Melissa found an endometriosis specialist on her own. Melissa was lucky enough to conceive and carry to term, and received her second lap within 3 months of her son's birth, during which she also received a diagnosis of stage 1A endometrial cancer. Melissa has survived the devastating effects of losing a job based upon her health status, having her relationships destroyed, as well as putting up with severe reactions to many of the medications that she has been on for treatment.

Aside from endo and cancer, Melissa lives with fibromyalgia, rheumatoid arthritis, inflammatory bowel disease, migraines, and asthma, many of which co-exist in many ladies living with endo.



EDITOR'S NOTE:

I have had the privilege and honor of getting to know Melissa over the past few months through extensive communications via email and Facebook. Like so many endometriosis patients, she has been through great adversity. Melissa has shown great leadership and has supported the endo cause a great deal. Her sense of humor and positive attitude often leave me chuckling. Her emotional journey is compelling. Even more compelling is her positive outlook and hopeful attitude that endo cannot and will not defeat her or take away her hope. Melissa inspires other chronically ill patients!

Melissa's online support has helped a great number of endometriosis patients.

Here is Melissa's letter to her endometriosis!

Dear Endo Cells,

This is your official notice that I have had it up to HERE with you. For far too long you have been causing me nothing but pain; physically, socially, and emotionally. Luckily you haven’t caused me financial ruin as I do have top of the line pharmaceutical coverage, although you have made it difficult for me to work at times. I am here to say that I am no longer going to let you get away with the path of destruction you have left in your wake.

From the time I was just a “baby” of 12 years, I have felt your unwavering disruption to all that is joyous in life. You destroyed my blood counts through the intense, prolonged bleeding “cycles”. The birth control pills that were prescribed to “regulate you” seemed to have no effect on you whatsoever. Week after week I would find myself at the ER, to the point where I believe I had frequent flier miles, if not at the very least having my file labelled as a drug seeker. However, even the best pain drugs out there that they would prescribe would still leave me in pain. At one point, you were still causing me pain despite taking Percocet every 4 hours, long-acting morphine every 12 hours and Demerol every 6 hours for the “breakthrough pain”. Is there even such a thing as “breakthrough” when the pain doesn’t go away to begin with?

I’ve done multiple pharmaceutical treatments to get rid of you. You tricked the birth control pills, every brand that I’ve tried that is, still continuing to cause me pain and heavy bleeding.

You didn’t like the injection of Depo-Provera, so much so that you decided to cause me to have convulsions, mood swings, severe depression, heavier than even heavy blood loss leading towards blood transfusions, all of which ended with me having my first of several "D&Cs", all in the name of trying to get rid of you. I did two rounds of Danazol, which helped to slow you down a bit, but in the end it appears to have led to the onset of fibromyalgia. Who knows maybe I was also destined to have fibromyalgia appear at some point in the future. I have tried the NuvaRing, which only lasted a few hours before you rejected that treatment completely. At least it was a quick decision. I had a Mirena inserted, you still decided to bleed every day for 6 months and then decided to have regular cycles anyway. I added the Arimidex and Micronor to the mix, you still decided to be hormonal pain in the butt by not responding to three medications all used at the same time. Because of these treatments, my risk of cancer has been raised, especially since I already do battle against endometrial cancer. You have also decided that you hated my left kidney and killed it by cutting off the blood supply. Thanks again. At least when you attacked my kidney you made the doctors sit up and listen and I finally had a name to call you other than hell.

[Editor's Note: Here is some information regarding how endometriosis can affect the kidneys in some patients]... See NDT: Nephrology Dialysis Transplantation.

You have devastated my dreams of a large family, leaving me with only the hope of the possibility, however slim, of having one more child. You have found me pregnant quite a few times, but with the exception of my beautiful Jacob, you have taken those away from me. It’s a pain that I will never get over, however it is easier to get through over time.

You have caused me great emotional pain. When you are a young teen, you want to fit in more than ever with your peers. However when you have to take days off school at a time, every month, this doesn’t bode well for friendships. You want to be able to go hang out with your friends, but when you’re exhausted and in pain, the only place you end up going is bed. You have seen many boyfriends come and go, unable to withstand the fear of someone they love never getting better, or the burden that our caregivers go through. You have met with several doctors, prior to finding the great knight who is determined to slay you. These doctors all suggested pregnancy, but with you endo, pregnancy appears to not want to stick with my body. Many times I’ve been tempted to have a hysterectomy just to cut you out of my life, however I know now that it’s not likely to help me out oh so much considering you’ve attacked my bowels and bladder. I’ve had you cut out of my bowel, but you make a sneaky return. I’ve had you cut out of my bladder, but the real issue might be your counter-part, interstitial cystitis. I used to have more bad days than good, and that made me one very sad lady.

I’ve taken the few gifts that you’ve given me; experience, knowledge and a driven desire to kick your butt and used it to help others. For the past 7 years I have run a support group for women with endo called Goddesses Of Endometriosis. Close to 1000 members and still growing, I have been able to use your negativity towards doing good, helping others to battle this disease at where they are at on their journey. You have allowed me to meet, educate and receive wonderful thank you notes from women all over the world. For this I am grateful, as helping others helps me at least feel like I’m contributing something towards getting rid of your existence. The website is: Goddesses Of Endometriosis.

I am now embarking on my next journey with you, trying to conceive another child with my partner. Leaving the medications behind has reminded me of just how much I dislike you. But I am determined to continue on with my life, with or without you. I am not going to let you destroy my dreams of one day completing my Masters and going into private therapy practice. I am not going to let you destroy my desire to have a happy family life. You may still make your annoying self known to me, but the only way you might limit me is physically. I am not your emotional and social hostage.

Sincerely,
Melissa Ralston
Leader of Goddesses Of Endometriosis (Yahoo Support Group)
Site for this group: Goddesses Of Endometriosis

EDITOR'S NOTE:

I thought Melissa's story of courage and hope would be the perfect way to round out the year.

Happy New Year!


%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%

UPDATE:

Melissa started a new endo blog tonight and I just had to update this post to reflect it!

Endometriosis: Facing the Battle Head-On


See my blog roll entry titled:

A New Blog -- "Endometriosis: Facing the Battle Head-On"... {{{{{ NEW BLOG AS OF 12/31/2008!! }}}}}


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

12/29/2008

'Jeanne's Endo Blog' Featured on 'The Canary Report'... How MCS Impacted My Reaction To Nitrous Oxide For A Tooth Extraction...

Susie Collins blogged today about my experience having a tooth extracted on December 26th.

See "Who’s chirping about Multiple Chemical Sensitivity?" for the story posted on The Canary Report.

Thanks for mentioning my blog today, Susie. My experience with nitrous oxide was enough to keep me from ever having it again!

See previous blog post below for specific details about my experience with nitrous oxide. I am still feeling lethargic today and I had the nitrous oxide three days ago! This is not supposed to happen but that is how my body has reacted to it...

Related link:

Friday, December 26, 2008 No More Abscess. Tooth Extraction Itself Went Well. Going To Go Rest Now. (UPDATED: My Nitrous Nightmares)...

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

'Quote Of The Day' From 'The Foundation For A Better Life'...

Today's The Foundation for a Better Life "Quote of the Day" just popped into my inbox.

I love my work on this blog! I am committed to providing quality information, support, and comfort to chronically ill patients and their loved ones. I am passionate about this blog!

I really like the quote below and decided to highlight it here today.

I'd love to hear your feedback (positive or negative) about my blog.

Has it helped you in any way?

Does it give you support and information?

Does it ever increase your awareness of environmental issues that impact those with chronic illness?

I would really love to hear from readers. What do you think of my blog? Is it meeting your needs?

Have a wonderful day and I'll sign off with that Quote of the Day I mentioned...

“When work, commitment, and pleasure all become one and you reach that deep well where passion lives, nothing is impossible.”

—Nancy Coey; motivational speaker

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

12/28/2008

Jenni Saake's Tips For Coping With Infertility At Holiday Times...

Recently, I was thinking about how the holidays can be a particularly challenging time for infertile couples. With all of the holiday get-togethers (often with babies and small children present) and with all of the "holiday expectations" many face this time of year, I decided to contact Jenni Saake for ideas on coping tips for dealing with infertility at holiday time.

I didn't have an email address for Jenni, who I "met" online several months ago through National Invisible Chronic Illness Awareness Week.


Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network


So I sent her a twitter message asking if she had any ideas for writing a post about coping with infertility at holiday time.

Jenni Saake is the author of:

Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss



Here is a site with information on her book, referenced above:

Hannah's Hope

After contacting Jenni on twitter, she sent me several messages back with feedback on my question. I really appreciate her quick response and I'm including links she provided here. Hopefully they will help readers struggling with infertility (endometriosis-induced or otherwise).

Here are the links Jenni Saake provided:

1)

"Surviving 'Parent's Days': 101"

This is an article written by Jennifer Saake. [This article is geared for Mother's Day and Father's Day but may also help when coping with other holidays, per Jenni].

2)

The Road Less Traveled: A Journey Through Infertility

[This article written by Meridith at the cited link].

3)

Great Books For Christmas Gifts For The Reproductively Challenged Woman

[This article written by Barbara Winters at the cited link].

To contact Jenni Saake, you can click link below to visit her on twitter:

Jenni Saake (aka "Infertility Mom")
A few months back, there was a seminar on blogtalkradio talking about "Medications, Illness, Fertility and the Desire for Motherhood" with Jenni Saake. (Her seminar is available in the blogtalkradio archives).

Just click the "blogtalkradio" icon in the sidebar to access her seminar from last fall.

Related link:

Wednesday, September 10, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - "Medications, Illness, Fertility and the Desire for Motherhood"

Hopefully's Jenni's links above and her blogtalkradio seminar will be useful for readers coping with infertility at this challenging time of year!

THANK YOU JENNI!

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

Power Outage Probable. It Just Came Back On. Winds 60 mph. Will Have To Blog Later...

It's very windy. With several power outages lately (including a little while ago), it's probably not worth writing up a blog post and having my computer go down before it saves properly. I'm too tired to lose any work.

Therefore, the post I was planning to write today will have to be postponed. I was hoping to write about how the holidays can be particularly challenging for infertility patients. Unfortunately, I don't think I'll be able to post about this today.

I just don't think rushing to write something before we lose power again is a good idea.

I hope you are warm and safe... whereever you are reading this and that the weather will calm down soon. In the meantime, I'm going to go curl up under the microfleece blanket my sister gave me for my birthday last week! It's the softest blanket I have ever felt!!!

No more runny nose now that my tooth is out...

I'll be back to blogging when the weather cooperates!!

I'm excited to go snuggle with my awesome new blanket by the fire!

P.S. I didn't have any more "nitrous nightmares" last night. :) My tooth infection was definitely the cause of my runny nose; my nose has stopped running!

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

12/26/2008

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.

12/25/2008

Season's Greetings: Illness, Power Outage, And Adversity Can't Stop Christmas And Hanukkah From Coming!

I am home sick today and cannot be with my family. I don't need to share this with others. (I know this is the time of year for sharing but not the germ kind of sharing if you know what I mean).

While I miss my family very much and am sad that I can't celebrate with them in person today, I want to focus instead on gratitude. There is much for me to be grateful for. Rather than focus on negative feelings, I'd like to focus on things I am thankful for...

Today's top 10 reasons I am grateful:

1) I have a family that loves me who I love very much. We have lots of love in our lives.

2) We have a roof over our heads and enough food to eat. We appreciate what we have and recognize that there are people who are less fortunate than we are. Our thoughts are with them today.

3) We have health insurance and access to great doctors. We know that there are millions of people with no health coverage at all.

4) We have transportation, electricity (something we really appreciated last night when we lost ours do to a power outage), and water. We are safe.

5) We have the ability to find the resources we need to manage the adversity we encounter. We recognize that adversity and challenges can provide opportunity for growth and enlightenment.

6) We do our best to learn from our mistakes and grow from them. We help others. We share information and resources. We pass along coping tips for those going through similar experiences.

7) We volunteer our time and talents to causes we believe in. We are grateful for the opportunity to help others through difficult times.

8) We are thankful that we keep learning, growing, adapting, and connecting with others. We are happy to know some outstanding, wonderful, thoughtful, insightful people who make the world a better place each day.

9) We are open-minded. We enjoy learning about circumstances different than ours. We appreciate diversity.

10) We are free. We have freedom of speech. We have freedom of religion. We are free to make our own choices in our pursuit of happiness.

Let me say that one reason I am really grateful for electricity today (see #4 above) is that we had a power outage last night. It set the smoke alarms off (no fire but all of them going off at once was very loud & startling). We manually turned off all of the alarms we could reach. (They still have batteries in them & still work. They are electrically wired - normally - as well. So they still worked after we "turned them off" noise-wise. We just undid the electric portion but if there were a fire right now, they would still go off). We have yet to hook them back up because we were asleep when the power got restored.

So we survived the power outage last night. Opening our presents in the dark (after dealing with the smoke alarms) was interesting. (There was no fire. The problem with the smoke alarms was related to the power outage and absence of power to the ceiling fan above the woodstove... a fan which is always on when the woodstove is so as not to confuse the smoke detector which is a little too sensitive).

I am thankful that our woodstove was already working prior to the power going off. I'm thankful that we had the light of the fire to help us to find our Hanukkah candles. I'm grateful that lighting a Hanukkah candle gave us enough light to locate a small flashlight (and a cell phone to use as a spare flashlight... which we needed to manage the smoke detectors)! When things settled down, we were fortunate to be able to open our Christmas and Hanukkah gifts by firelight and the Hanukkah candle (with a little help from the flashlight).

Our power was out on Christmas Eve from about 8:30 pm to 1:00 am. The power company fixed the downed wires.

IT WAS VERY WINDY!!!

Despite all of the commotion at our house, Santa still managed to find us.

I am scheduled to have my abscessed tooth extracted tomorrow. The oral surgeon squeezed me in for an emergency appointment for tomorrow (scheduled shortly before I got sick yesterday). I hope to still be able to make it tomorrow to have an abscessed tooth extracted. I'm thinking maybe getting the infected tooth out might help me feel better with my sinuses (and stop the post-nasal drip which is irritating my throat and making it very hard to tell if I have a virus or not). I'm on an antibiotic for the abscessed tooth.

So in the morning, I need to call them to ask them if they think my tooth infection has caused a chain reaction/spread to sinus problems with a VERY runny nose and a froggy throat.

I honestly don't know for sure if I'm contagious or not. I have never had an abscessed tooth and I just don't know if it could spread and cause infection elsewhere (?) but I do know my face hurts. So I may still be able to get my tooth extracted tomorrow. If so, I will be grateful for that because the pain feels like electric shocks to where my tooth is. (I didn't know teeth could hurt this much until now).

In any event, I wasn't going to chance it today. I don't need to infect a houseful of people on Christmas. Also, my niece is just getting over pneumonia. I just didn't think it would be wise for me to go. So my husband and daughter went and I stayed here.

I'll call the oral surgeon when they open in the morning and see if they want me to come in or not. I can't eat for 8 hours beforehand because they are going to put me out for it (due to my complicated medical history they thought it best not to do it while I'm awake and I tend to agree with them on that).

If they think my symptoms are tooth infection-related, then obviously the sooner I get in the better. If not, I don't want to get them sick and may need to get re-scheduled and get stuck with the dental deductible for 2009.

Thank you to my family, my blog's readers, my friends, my local endo support group members and all of my wonderful blogger friends who have such positive spirits and who make the world a better place!

So enough talking about last night's power outage or tomorrow's tooth extraction. As you can see, I have a lot to be thankful for. After I post this, I plan to meditate for a little while before my family returns home from holiday visits with extended family. They are en route as we speak! :)

Quote of the Day from The Foundation for a Better Life:

"And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? [Christmas] came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'till his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store. What if Christmas, perhaps, means a little bit more.”

—Dr. Seuss (1904-1991); writer, cartoonist

My thoughts are with those who are cold, hungry, in pain or unhappy today.

Today I wish for world peace.


"We shall find peace. We shall hear angels. We shall see the sky sparkling with diamonds".
--Anton Chekov


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

12/24/2008

Merry Christmas & Happy Hanukkah!! Happy Holidays!!

I have been trying and trying to figure out a special post for Hanukkah, Christmas Eve and Christmas Day but I am, frankly, too tired to write the type of post that I had envisioned. So I'm going to keep this short and simple.

In my house we celebrate both Christmas and Hanukkah. So things have been busy lately.

We've been lighting the Hanukkah candles every night and we are preparing for Christmas visiting tomorrow.

I am currently sick and have not decided whether I'm contagious or not. So I may or may not be able to participate tomorrow with the Christmas visits.

I'll have to decide that soon but right now I'm just not sure exactly what is going on (i.e. allergies, virus, bacterial infection?)

If it is bacterial, I'm already on an antibiotic for an abscessed tooth but that doesn't necessarily mean I'm not contagious.

If it's viral then I shouldn't go & infect others... no matter what day it is.

If it's allergies, I can go.

The problem is that I don't think it's allergies. I'm still sorting it out based on many past similar "bugs" but I'm guessing it's viral. So I probably will not be going for our planned Christmas visits.

I do not want to be responsible for getting anyone else sick. I wouldn't want to make anyone else feel like I do now. I can't get caught up in what day is on the calendar. I have to listen to my body... for my own good and for the health of my loved ones.

This does make me sad but it's not the first time I've had to sit out Christmas at home. With my immune system, this is a tricky time of year.

With various family members being especially susceptible (i.e. people with asthma) and with my niece just getting over pneumonia, I am coming to terms with the fact that I will probably be home for Christmas tomorrow.

I have learned to accept such events as part of being chronically ill.

Happy Hanukkah and Merry Christmas! Being chronically ill can be especially hard at this time of year. Keep your chins up!

Sending everyone best wishes, peace, and joy!

So... Merry Christmas, Happy Hanukkah, and Season's Greetings to everyone!

As we approach a new year, let's hope for healing and comfort for those who are in pain. Peace!

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

I Won Kelly Damron's Book Giveaway For The "Twin Peas Blog And Podcast"! I Won The Book "Hope For The Flowers" by Trina Paulus!

One of the blogs I follow is Kelly Damron's:

Twin Peas Blog and Podcast: Infertility and Premature Birth resources and experiences


Here is some information about Kelly from her blog:

Kelly Damron survived infertility only to experience the premature birth of her twin daughters. She rebuilt her marriage that had been on the brink of ending in divorce all because of infertility. In this blog she talks about infertility and much more.

Recently, Kelly Damron held a blog contest. The prize for winning this contest is a book titled:

Hope for the Flowers by Trina Paulus

Today I got a Facebook message from Kelly that I was the winner of the book giveway!

Here is Kelly's post that I commented on (and that entered me into the book giveway):

"Support Groups"

Here is Kelly's post about the contest results:

"And the winner is..."

In addition to writing her blog on infertility and premature infants, Twin Peas Blog and Podcast: Infertility and Premature Birth resources and experiences, Kelly is the author of the book Tiny Toes: A Couple’s Journey through Infertility, Prematurity, and Depression.

THANK YOU to Kelly Damron for holding this contest. I look forward to receiving my prize! :)

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

12/20/2008

(VIDEO): Menstruation Education Courtesy Of Disney And Kotex!

Disney & Kotex paired up to produce this video clip in 1946 (posted on YouTube). I stumbled across it today and felt compelled to post it here. Before posting the clip, I asked my friend Alicia (aka Yaya of Yayastuff) for advice at presenting this clip in a sensitive manner. (I'll leave the insensitive part to the video clip itself). For those unfamiliar with Alicia's background, here is her "about me" summary from her blog:

Alicia aka "Yaya" says --- "Read along in my quest to become a Mommy, one way or another. It's been 6 years and several miscarriages, but I'm not giving up!"



Below this clip are the captions Alicia came up with for it. (I asked her for ideas because she's much funnier than I am and because I didn't want to offend any readers with this clip. It is either offensive, funny, or both... depending on who is watching it and their mood/life situation...

So here is Alicia's "movie review":

"Dang those hormones!"
"Just Blame The Pituitary"
"Mother Nature Hates Me"


Despite Alicia's intense suffering on her path to motherhood, she continues to retain her keen sense of humor and I thought including her "video captions" with this video would be a perfect fit. I wanted to be sensitive to readers that might take offense to Disney and Kotex's mini-film (about 10 minutes long). It is NOT included here to offend (!!) but rather to assist women my age at comprehending at what the generation before us was taught! Perhaps between the utter nonsense and sexism in it, you may find some twisted humor in watching this video and picturing it being shown in sex education classes in schools. It's no wonder mothers the age of mine are generally not comfortable talking about periods and period pain!!

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

12/19/2008

VIDEOS on Glass Recycling Day & Over-packaging With Plastic, Why Plastics And Endometriosis Are Not Good Companions, & Facebook Groups Of Interest!

I just joined the Keep it Organic group on Facebook.

I discovered Keep it Organic group after Vanessa Posada has posted about it on another Facebook group: Fake Plastic Fish.

Both are interesting Facebook groups so check them out!

Anyway, the Keep it Organic group recently uploaded a new video for Glass Recycling Day called "Glass Can't Recycle Itself". (Had I known about Glass Recycling Day (which was December 10, 2008), I would have posted about it sooner but I'm figuring "better late than never").

In any event, here is the winner of the Recycle Glass Day YouTube competition:



(Per YouTube, this stop motion video was posted on YouTube on November 11, 2008 and produced for GPI's Glass Recycling Day PSA by Michigan State University)

For more information about glass recycling:

Glass Packaging Institute

The link below is the source for the information below it titled "Toxic Link to Endo":

The Endometriosis Association

Toxic Link to Endo:

ENDOMETRIOSIS and the TOXIC LINK-

Endometriosis is an endocrine and immune disease that affects an estimated 89 million women and girls around the world, regardless of ethnic or social origin. The incidence of allergies, asthma, and chemical sensitivities in women with endometriosis is higher than in the general population. Women with endometriosis are also at higher risk for autoimmune diseases and certain types of cancers.
The connection with chemical toxins-

Dioxin is a toxic byproduct of industrial and consumer processes that involve chlorine or incineration of chlorine-containing substances, such as PVC (polyvinyl chloride, commonly known as “vinyl”) plastics. The main sources of dioxins are medical waste incineration, municipal waste incineration, chemical and plastic manufacturing, some pesticides, and pulp and paper bleaching. PVC disposable medical devices, such as IV bags and tubing, are a major concern because they become medical waste, which is often incinerated. Dioxins formed during incineration are released into the air and travel via air currents, contaminating fields and crops. Cattle and other livestock eat the crops and the dioxin enters their tissue. Humans then eat the contaminated animal products.

In the early 1990s, the Endometriosis Association found that 79% of a group of monkeys developed endometriosis after exposure to dioxin in their food during a research study over ten years earlier. The severity of endometriosis found in the monkeys was directly related to the amount of TCDD (2,3,7,8-tetrachlorodibenzo-p-dioxin – the most toxic dioxin) to which they had been exposed. Monkeys that were fed dioxin in amounts as small as five parts per trillion developed endometriosis. In addition, the dioxin-exposed monkeys showed immune abnormalities similar to those observed in women with endometriosis.

I came across this 1 minute video on YouTube and just had to share it.

Here is the YouTube description of it: Winner of Friends of the Earth's Best One-minute green film award.


Director Ulla Jacobsen (Denmark) on her entry: "Over-packaging of children's toys takes on absurd dimensions..."

What our judges said:

"Simple story, simply told" - David Sproxton
"Brilliant film. Perfect! The best!" - Dilly Gent
"Good concept" - Andrew Macdonald




This post was a bit of a hodge-podge about glass recycling, some interesting Facebook groups, and the dangers of plastic manufacturing and incineration to people's health (specifically in regard to endometriosis but also impacting other conditions).

Reducing, reusing, and recycling is so important!

Finally, don't forget to check these out!!!

(1) The Together We Can Cure Endometriosis Facebook group

(2) The "Jeanne's Endo Blog" Blog Network on Facebook

I look forward to seeing you on Facebook. There are many worthwhile groups there.

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

12/18/2008

(VIDEO) CNN clip: "FDA Failing You: Govt Says BPA IS Good For You"

I have posted about BPA (bisphenol A) before.

It's a chemical that readers here are typically particularly vulnerable to... given the nature of their chronic conditions.

Rather than get all wordy, I'll let this video speak for itself:



Description of above video as per YouTube: Airing Date Aug.18, 2008 - Lou Dobbs Tonight: FDA Failing You: Govt Says BPA IS Good For You

News links:

Pollution. It's in you. Brought to you by toxic nation.

Plastic bottle ban?

Common Dreams.org News Center: Canada Moves Toward BPA Ban; Wal-Mart Will Pull All BPA-Laced Items

Lawmakers introduce BPA ban

Wikipedia entry on BPA:

Bisphenol A

Related link:

Thursday, October 30, 2008 Endometriosis Blog: BPA Controversy Continues As FDA Disputes Scientific Findings (UPDATED)

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

12/16/2008

Endosulfan Pesticide Banned in New Zealand: Endometriosis, Infertility, Breast Cancer & Pesticides...

Do you have endometriosis, infertility, or breast cancer? Then this post may be of interest to you.

I am currently reading a book called Silent Spring (for information regarding this book, please see the environmental section of the right sidebar of this blog).

It talks about a number of things including pesticides. I am about 2/3 of the way finished with this book and I look forward to telling you more about it in a future post.

Interestingly, I just last night received a Google alert for endometriosis regarding a pesticide called endosulfan that has been banned in New Zealand.

Here is the Google alert I got that was flagged for the key word "endometriosis":

The New Zealand Herald: Cancer group delighted with ban

The reason this is particularly interesting to me is that the Silent Spring book I'm currently reading was written decades ago and covers the dangerous effects of pesticides, insecticides, and herbicides.

ALL THESE YEARS LATER, SUCH TOXIC CHEMICALS AS THOSE WRITTEN ABOUT IN SILENT SPRING ARE STILL IN USED IN SOME PARTS OF THE WORLD.

It is alarming that the warning bells of Silent Spring were not heeded and that chemical companies' profits appear to have won out over public health, the well being of the planet itself, and common sense. Rachel Carson's prescient story of the profound impact of such toxins is mind-boggling to me.

Endosulfan has been banned in many countries as per the preceding wikipedia link.

Per the wikipedia entry on endosulfan, it is registered for agricultural use in the United States.

Here is an excerpt from the endosulfan wikipedia entry:

Health effects

Endosulfan is one of the more toxic pesticides on the market today, responsible for many fatal pesticide poisoning incidents around the world [see the wikipedia entry for footnotes]. Endosulfan is also a xenoestrogen — a synthetic substance that imitates or enhances the effect of estrogen — and it can act as an endocrine disruptor, causing reproductive and developmental damage in both animals and humans. Whether endosulfan can cause cancer is debated.


For more information on endocrine disruptors, see the "Our Stolen Future" website.


This book is next on my reading list and I plan to review it in the future.

After numerous quotes from and references to this book on this blog, I am finally going to read it in its entirety! (See book info in right sidebar of this blog).

First, I need to finish reading "Silent Spring"!

Related articles:

There are numerous articles that have talked about some of the topics mentioned in this post. For more info from past posts, please use the search engine located in the top left corner of this homepage. Type in your search word and then just click search to be routed to previous articles.

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

12/15/2008

Way To Support My Writing Here: Amazon Deadline For FREE Super Saver Shipping!

Below is Amazon's list of Christmas Ordering Cutoffs. Ordering via Amazon is a way to support my writing of this blog. Besides that, ordering online saves time and gas money. If you are interested in FREE shipping, the time is now!

Above chart obtained from www.amazon.com on 12/15/2008

While the main purpose of my blog is to HELP PEOPLE, your support by ordering through its Amazon ads is very much appreciated and helps me to continue to provide high quality information and support for various chronic health conditions.

To access the Amazon site, just click any of the Amazon ads located on the right side of this blog.

I have firsthand experience with many of these illnesses and have had the opportunity to locate/use various resources and learn about a wide variety of treatment options (both traditional and alternative). Hopefully through this blog, I can share what I have learned over many years (26 years for endometriosis alone) to assist others in finding information for managing their illnesses.

The amount of time I spend writing/researching articles, responding to blog readers' comments on the blog itself, interacting with various health care organizations, managing blog-related email, networking with fellow health bloggers for the purpose of improving this blog (by reading and commenting on their blogs and by direct communication), finding video clips for articles, etc. is significant.

I normally do NOT use blog posts for advertising purposes like this. I would like to note that this is an exception to that rule. Since I do work on this blog 7 days a week (either on the blog posts themselves or working on the blog behind the scenes), I think it is fair to be compensated for my time. To be perfectly honest, I I feel a little funny asking for your orders. However, I have learned after 6 months of blogging that ads generally don't make revenue unless some attention is drawn to them! While I have ads on my blog year-round, it is only recently that I have noticed an upsurge in orders. If I'm going to ask for people's holiday orders, this is the logical time to do so!

I really appreciate your support. Thank you!

P.S. Amazon orders can be placed through my blog any time of year... not just the holidays!! :)

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

12/13/2008

VIDEO: Dangers Of Plastic Bags, Reducing Plastic Bags Will DECREASE Foreign Oil Dependency!!

The previous post that mentioned the dangers of plastic bags has received a good-sized reaction. So I decided to post some more info on it. After all, this issue affects our health, the health of the planet, The United States' dependance on foreign oil, the safety/survival of wildlife, etc.

So here is a video with more information...



Per the video above, China will save 37 million barrels of oil each year due to their ban of free plastic bags. -- Source: CNN.com/asia January 9, 2008

That's a lot of oil!!

The slideshow above was created by The Pocono Record.

For more information, see PoconoGreen: Your place for the latest environmental news from the Pocono Record.

Here's their multimedia section (see below) which discusses the dangers of plastic bags if you'd like to learn more. It contains a petition regarding plastic bags. As you saw in the video clip above, numerous other countries outside the US have taken measures to outlaw or tax plastic bags... PoconoGreen Multimedia.

San Francisco, CA was the first US state to attempt banning plastic bags.

See related articles about that here:

S.F. FIRST CITY TO BAN PLASTIC SHOPPING BAGS: Supermarkets and chain pharmacies will have to use recyclable or compostable sacks

Unfair Park: The Dallas Observer Blog - Article title: San Francisco Banned Plastic Bags. But Dallas? Not Going to Happen.

The Dallas article above quoted the American Chemistry Council, which was apparently quoted in April 2008, as stating that insisting a ban on plastic bags and food containers would:

"have negative consequences on the local environment, the economy and the school system"

Really!? I'm not following their logic but that is apparently their argument against banning plastic bags. I do know that my quick scan of their site just now looked like one big ad for how wonderful they are and how they are helping everyone from the infant pictured in an incubator to a small child smiling from her bicycle. I'm not saying that plastics don't ever serve any useful purpose. I just thought the pictures prominently displayed on their site were interesting choices. I'll leave it at that.

Anyway, moving on to others working to tackle the plastic bag problem...

The Whole Foods chain announced in January 2008 that it would stop offering plastic bags to its customers:

Whole Foods Chain to Stop Use of Plastic Bags.

As Jessica of Live On Purpose, a reader of this blog, remarked in a comment to a post the other day, some areas in Colorado reward shoppers with 5 cents off their grocery bill for returning their plastic bags to stores.

As Ayaka Nangumo from Facebook noted:

"In many stores in Japan, if you bring your own bag, you receive a point. You collect the points, and you can use the points to exchange to something or get some discount. I always carry what we call "eco-bag." These bags look much nicer than plastic bags, and they are durable, so I don't have to worry that the bag may get torn while I'm walking back home".

Susie from The Canary Report just clued me in to a very interesting site written by Beth Terry called Fake Plastic Fish. I can't wait to take a closer look at it as it seems jam-packed with information!!

Finally, Beth's site mentioned PVC and reminded me of a cool movie I saw awhile back called Blue Vinyl.

For those unfamiliar with PVC, it has been linked to endometriosis. PVC is short for polyvinyl chloride (PVC)... (i.e. "vinyl").

When reading the wikipedia entry above on PVC, you may want to pay special attention to the mention of the toxins dioxins and phthalates. These are connected to a great many illnesses, including endometriosis!

For information about the relation between endometriosis and toxins like dioxin and PVC, see the EA website section: Endometriosis Association's section titled "Toxic Link to Endo"

Related are some links (see blog archives for more):

Thursday, December 11, 2008 The Canary Report Features This Blog, Why Plastic Bags Are Bad News, And What Houghton Mifflin Is Teaching Students About Global Warming... (UPDATED)

Wednesday, December 10, 2008 Multiple Chemical Sensitivity: How You Can Help Patients With This Often Debilitating Condition!! (UPDATED With USA Today article)!

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

12/11/2008

The Canary Report Features This Blog, Why Plastic Bags Are Bad News, And What Houghton Mifflin Is Teaching Students About Global Warming... (UPDATED)

Editor's Note - Updated @ 11:45 pm on 12/11/2008:

I just wanted to re-emphasize the advertising policy for this blog. While I, as the author of this blog, may occasionally elect to write about products that I think may be helpful to readers here, this is not meant to invite comments about $118.80 designer bags for sale and the links to purchase them. I'm sorry... but for an anonymous commenter to post about an expensive designer bag (twice) on this post tonight is really missing the point. For details on the ad policy of this blog, please see this recent post:

Saturday, December 6, 2008 Jeanne's Endo Blog: No Scam, No Spam Policy!!



Quoting from the above post: "To clarify... ads on my site are currently all located in the sidebar. If at some point I decide to do product reviews, book reviews, or reviews regarding services my readers might find helpful, I will be sure to label my blog post clearly. At this time, however, ads are only in the sidebar". (Please note: As author of this blog, I may choose to include info about any products that I believe readers here might find helpful. For example, today I posted about a reusable grocery bag. This is an editorial decision for me to make).

Again, PLEASE, PLEASE, PLEASE do not post commercial links in comment posts. Thank you!

We're covering lots of topics today...

1) This blog was featured in today's post on The Canary Report: Who’s chirping about Multiple Chemical Sensitivity today?:


2) Plastic bags and how they are harmful...



3) Houghton Mifflin textbooks that teach students to question whether global warming is "real" (paraphrase)...



A) Thank you, Susie, for featuring info about this blog today!

B) Next, let's talk about plastic bags. Here is some information from the Facebook group Stop the Manufacturing of Plastic Bags!

Barrels of oil required for US annual plastic bag consumption: 12,000,000

Were you aware that barrels of oil are required to make plastic bags?

People automatically think about cars using petroleum products... but many don't realize the impact of plastic bags on our environment.

To learn more about this issue, please check out the Facebook group Stop the Manufacturing of Plastic Bags!

You may ask what to use instead of paper or plastic bags. (Many of you use reusable bags already).

Check out this handy option for reusable bags:



Ayaka Nangumo replied to my Facebook post about plastic bags as follows (reprinted here with permission):

"In many stores in Japan, if you bring your own bag, you receive a point. You collect the points, and you can use the points to exchange to something or get some discount. I always carry what we call "eco-bag." These bags look much nicer than plastic bags, and they are durable, so I don't have to worry that the bag may get torn while I'm walking back home. :)"

My response to Ayaka was:

"Ayaka,
What a great idea!! Rewarding people for using such bags. That's sort of like here where you pay a deposit for a soda can or bottle and then you get money back when you turn the empty bottle back in. I'd love it if they would do that in the US!! :)
Jeanne"

C) Now, let's move on to the topic of school textbooks and global warming.

Per Friends of the Earth, Houghton Mifflin books are presenting slanted information to students.



See below:

"AP government books published by Houghton Mifflin are teaching students that global warming's existence is up for debate. Below is information from Friends of the Earth":

Tell Houghton Mifflin global warming isn't a matter of debate:

Friends of the Earth has received a copy of American Government, published by mammoth Houghton Mifflin, which is used in AP government classes in high schools nationwide. The latest edition's chapter on "Environmental Policy" contains a discussion of global warming so biased and misleading it would humble a tobacco industry PR man:

"It is a foolish politician who today opposes environmentalism. And that creates a problem, because not all environmental issues are equally deserving of support. Take the case of global warming." (p. 559)

"The earth has become warmer, but is this mostly the result of natural climate changes, or is it heavily influenced by humans putting greenhouse gases into the air?" (p.559)

"On the one hand, a warmer globe will cause sea levels to rise, threatening coastal communities; on the other hand, greater warmth will make it easier and cheaper to grow crops and avoid high heating bills." (p. 559)

"But many other problems are much less clear-cut. Science doesn't know how bad the green-house effect is." (p. 566)

These are not quotes from oil company press releases. These and other such statements are made by the authors of American Government in the same omnipotent, textbook tone with which we are all familiar.

Please join us in writing Houghton Mifflin right now! We will copy your governor to make sure every state is aware of the problem with this textbook.

Tell Houghton Mifflin global warming isn't a matter of debate
I sent a letter to Houghton Mifflin... Will you consider doing the same?

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

12/10/2008

Multiple Chemical Sensitivity: How You Can Help Patients With This Often Debilitating Condition!! (UPDATED With USA Today article)!

Recently, I started communication with a lovely woman named Susie Collins. Susie writes The Canary Report about MCS (multiple chemical sensitivity).



I have MCS and I am very grateful and pleased that Susie found my blog. We have been corresponding ever since. Her site is nothing short of amazing!

I have MCS. Everyday items such as perfumes, cleaning products, and fragranced soap can cause severe reactions. On more than one occasion I have fainted in stores with new carpets. (I'll have to create a whole post just about all of my carpet-induced fainting episodes).

While you haven't heard me talk about MCS very much, this does not mean it doesn't severely impair me. In fact, it may well be the most challenging illness I have! It affects me every day. Every time I leave my house, I have to be on the defense against chemical reactions that can make me nauseous, dizzy, lightheaded, and even make me feel faint (or really faint)!

I can quickly develop an intense headache from exposures to chemicals that ordinary people do not react immediately to. (These chemicals aren't healthy for ANYONE. Some, like me, are just much more sensitive to them). I was diagnosed with MCS in 1993... shortly after my endometriosis was finally diagnosed. It affects me profoundly.

I ask readers here to please take just a moment to look at Susie's article:

What is Multiple Chemical Sensitivity?


She explains MCS better than I probably can so I'd greatly appreciate if you'd look at her article before I give you a real-life example of an episode where MCS affected me and my family.



Again, before I relate to you a story about ozone-emitting "air cleaners", I strongly urge you to just take a look at what MCS is by peeking at Susie's amazing article listed above.

It helps explain what MCS is. It includes a moving video that really captures just how serious MCS can be. (Thanks for sharing this YouTube video on your site, Susie)!



If you ever wear a fragrance, purchase fragranced soaps, or use cleaning products that are not "Earth friendly", you could be making someone near you sick. This sounds dramatic but it's true! I know because I'm one of the ones reacting to such items. (Yes, no matter how many times you wash your hands after using cleaning products... I can still smell the residue on your hands of items like bleach). So the products you use affects not only the environment but MCS patients near you. MCS is a terrible condition.

I will be writing much more in subsequent posts about MCS. I wanted to start by referring you to Susie's excellent article on what MCS actually is to start. Then I will talk about the dangerous ozone-emitting "air cleaning machines" that you will want to avoid purchasing (items that are heavily marketed at this time of year as holiday gifts to help your chronically ill friends and relatives. The false claims of the products are astounding. Again, here is Susie remarkable article on MCS to start:

What is Multiple Chemical Sensitivity?

Now on to my "air cleaner" story. This time of year in particular, many companies are pushing "air cleaning machines" as holiday gifts. Many claim to help asthma patients. In fact, these machines put asthma patients at greater risk! These are not just false marketing claims. These are dangerous statements that potentially put chronically ill patients at risk of worsening the very conditions these machines are purported to treat!

Here is an article Susie wrote that grabbed my attention since I had a "run in" with such an "air cleaning machine": Warning: Avoid ozone generating air machines.

After receiving such a machine as a gift from generous relatives who saw it advertised as helping asthma, I noticed an odd smell emanating from the machine. Here is an excerpt from a comment that I placed on Susie's blog post about this last night:

Susie,

Wow!!! Here is my story with these atrocious machines.

A couple of years ago, my family received an ozone-emitting "air cleaning machine" from thoughtful relatives. My daughter has asthma. The outside of the box contained all sort of claims stating or implying this machine to be HELPFUL for asthma patients. Since I have MCS and she has asthma, they got this to try to help us “clean the air” in our house. This was a holiday gift. We opened it and set it right up. Since my daughter is the one with asthma, we set it up in her room. (I yanked it within 24 hours... more details coming up).

The very first night we did storytime before bed (after setting up the machine in her room), we sat in the rocking chair next to it to read bedtime stories. I immediately smelled an odd odor which I quickly traced to the “air cleaning machine” and turned it off.

After tucking her into bed, I dove into the packaging material, instructions, etc. I wanted to investigate this machine before hitting the on switch ever again. As we joke in my house, “my nose is never wrong”. After MANY hours on the Internet, I discovered what you are reporting here after combing through site after site.

One of the first things I did was look the product up on Sharper Image (the seller) to verify that I was searching for info on the correct machine. The machine was listed as being VERY expensive and I felt badly when I saw how much it had cost! I was on a mission to see what this expensive machine claiming to help patients of various illnesses actually DOES! To make a long story short, what I found was NOT pretty.

Everything you (Susie) said in this article is aligned with what I found after researching it on the Internet for many hours a couple of years back. I read through everything from Consumer Reports to reports from government agencies to message boards about the apparent tall tale that the Sharper Image site listed online. As you have beautifully laid out, these machines not only DON’T live up to their claims to “clean” the air but they actually emit HARMFUL ozone!!

OK. I had read enough. This machine was not going to be used in my home ever again!!

After presenting my husband with the convincing evidence that this machine didn’t help AND did hurt, he agreed we’d stop using it. What next? Should we tell our relatives the truth about the machine and risk hurting their feelings hurting their feelings by rejecting the holiday gift they so generously picked out for us to improve our health? We didn't know what to do.

Anyway, there was lots of proof this machine was hurtful rather than helpful!

In addition to my Internet research about this product, I had called online healthcare professionals. I called the American Lung Association and was connected (for free) to a nurse who had special training in respiratory therapy. She advised not using the product. (Our pediatrician's office didn't know much about the product when I had called).

So, we had used it for about a day. With all of the holiday commotion, it had not occurred to me to sit down and scan the box in-depth for clues of trouble. (Besides that, the box was covered with false claims and misinformation).

If I had not had a gut feeling that the funny smell emanating from the machine spelled trouble, I might never have launched my Internet quest and phone calls for the real scoop on such machines!

This article [of Susie's] is a great service!! It’s timely (with such items being heavily promoted at holiday time... which is when my relatives bought us one).

Also, it is important for fantastic articles like this to be available so that when confused consumers go on their “information searches” (as I did), they will see ACCURATE info. (I had seen message boards and reviews. All either rated it 5 out of 5 stars or ranked it a 0 or a 1 while going on to rip it apart and tell the truth about its dangers. (So I’m guessing that some of those 5 star reviews were planted by reps of the companies who make obscene profits from these dangerous machines but maybe I’m too cynical).

All I know is that everyone online seemed to “love it or hate it”.

THANK YOU for this article!! It is so great to see the FACTS about this getting out to the public. A very timely piece!!

Readers here: Please do me the honor of checking out Susie's outstanding site that is educating and helping many MCS patients, myself included!

Here's that address one more time:


The Canary Report

So how you can help MCS patients? BELIEVE THEM!!! LISTEN TO THEM AND TAKE THEM SERIOUSLY... THEY ARE NOT IMAGINING MCS!!

This holiday season, when you dress to go to family gatherings, consider not applying that perfume or cologne. It makes some of us feel very, very sick!

This is a real and serious illness that is very misunderstood and not in patients' imaginations. I know from personal experience!!

UPDATE... USA Today article...

Ionizing air cleaners get zapped

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

12/08/2008

Engage With Grace: The One Slide Project



I'm writing about Engage With Grace: The One Slide Project, first brought to my attention by Laurie Edwards.

Laurie is the author of a book called "Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties".

She also writes a blog called A Chronic Dose: A Chronic Illness Blog .


Listen to Alexandra Drane:


Engage with Grace from Health 2.0 on Vimeo.

See newspaper articles about the Engage with Grace campaign:

The Boston Globe's November 26, 2008 article: "Talking turkey about death: Bloggers urge a holiday confab on terminal care"

USA Today's November 30, 2008 article: "The end-of-life discussion can be made easier"

The ultimate goal is to get people talking about end of life decisions.

After reading Laurie Edwards' post, I was inspired to join the blogger rally for this cause.

A couple of days later I discovered another post about this issue. It was written by MJ of Rhymes With Migraine. I'm thankful that MJ's post reminded me about my intention to join the rally of bloggers around the world writing about this important topic.

The following was written by Alexandra Drane and the Engage with Grace team. To learn more, please visit Engage With Grace: The One Slide Project

Engage With Grace: The One Slide Project

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They're about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let's start a global discussion that, until now, most of us haven't had.

Here is what we are asking you: Download The One Slide and share it at any opportunity with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

To learn more please go to Engage With Grace: The One Slide Project.

Thank you Laurie and MJ for bringing this campaign to my attention.

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

12/06/2008

Jeanne's Endo Blog: No Scam, No Spam Policy!!

Today I have just had ONE unpleasant experience too many. Today was my threshold for scam and spam!



So I decided to write an open letter to anyone out there who would ever consider hurting the readers of this blog with unethical marketing practices, false claims, etc.

Perhaps such a letter will facilitate the unclogging of my poor inbox and perhaps make it a bit easier on me when it comes time for me to click the "publish" button -or- to click the "reject" button on comments to posts on this blog. (Thank goodness for the comments moderation option, though).

Hopefully this post will clear things up.

So here's my open letter regarding the "no scam, no spam" policy of this blog:




Dear companies/people who like to make money off of sick people by pretending you are doing them favors (and other unethical companies/people),

+ I'm sick of spam.

+ I'm tired of being cautious (sometimes to the point of paranoia) due to some of the unscrupulous companies/people that have contacted me regarding this blog or posted comments that have needed to be rejected.

+ I'm tired of dreading opening my own email.

+ Most of all, I am sick to death of encountering one company after another that is preying on people who are sick.

+ Enough. Not here.

+ Not on this blog and not in my inbox.

+ No more.

Please DO NOT post comments to my blog for the purpose of padding your wallet.

Comment fields of this blog are open to anyone who wishes to post NON-commercial remarks.

Attempting to use this blog's comment fields to plug your company are NOT welcome on this blog. (P.S. I already get too much email. So please be sure you REALLY have something beneficial to offer before sending me email because I don't need spam. If you are a reputable company and you truly believe you have a product or service that would benefit readers here, you may contact me via email. If I think your product or service might interest my readers, if it is appropriate/relevant to the topics of this blog, and if you are interested in purchasing some ad space in my blog's sidebar, email is the way to reach me).

Please DO NOT prey on my blog's readers. They have enough challenges!

I will make every effort NOT to give free advertising to companies that only care about their own profit margins. However, I am human and it's possible that someone unscrupulous could slip something by me via the comment moderation feature and that it could get posted in the comment fields of this blog. I hope not. If I do determine I have made such a screening error, rest assured that I will use the power of word of mouth to get everyone up-to-speed about my mistake.

Please do not fill up my email inbox with notes of flattery that are intended to draw me in. I don't want flattery. I want relief, support, and comfort for patients... not promises, misleading ads, false cures, or attempts to get me to post free advertising for you or your company on this blog.

A few months back, one of you "for-profit" companies sent me a direct email. You were asking about guest blogging right here on this site. Your email was very polite (almost deferential). I responded to your direct email request for information with a detailed direct email response back. I referred you to the standing ad-handling policy at that time (see "related link" below). I offered to discuss the possibility of exploring possibly advertising your company on this blog - in an appropriate location/manner - and made it clear that I have editorial control over the content of this blog's posts. I never heard back from you or your company... until this weekend.

I have a duty to my readers to be clear about what is advertising and what isn't. Advertising your company by posting a link back to your site within a comment field on this blog is not acceptable. Not only would that be free advertising for your for-profit company but, much more importantly, it would not be fair to my blog's readers to blur the lines between what's an ad and what's not.

To clarify... ads on my site are currently all located in the sidebar. If at some point I decide to do product reviews, book reviews, or reviews regarding services my readers might find helpful, I will be sure to label my blog post clearly. At this time, however, ads are only in the sidebar.

So if you have posted a comment to my blog recently and are wondering why I haven't posted it yet, it's because I'm not going to. As I informed another representative of your company a few months ago, I don't allow companies to write their own blog posts here and I don't allow companies to post their commercial links in the comment fields responding to my blog posts. I took a fair amount of time explaining this in my email a few months back. Perhaps representatives of your company are not communicating my message with each other.

My ad policy was posted prior to the email your company sent me a few months ago. While the type of ads my blog carries have since been modified (I no longer use AdSense ads), the basic policy is the same...

I personally write the blog posts (unless I feature a guest blogger of my choosing). Blog post comments cannot contain advertising. Ads are in the sidebar. If that ever changes (i.e. if I begin featuring product reviews within blog posts), I will make it clear at that time. Comment fields will stay non-commercial. The types of ads is always subject to change.

While one specific company prompted me to write this post, MANY incidents have led up to it. This ISN'T just about one company. This scamming and spamming has become a pattern that I intend to do everything in my power to stop.

So I'm not naming any specific companies here. What I am doing is letting people out there know what is welcome here and what's not. The comment fields of my blog are not for sale. Uplifting, informative, helpful comments are enthusiastically welcome and encouraged here. The key is that the comment fields are not for commercial links, ads, etc.

Through trial and error, I have decided to currently display the ads you see in the right sidebar of this blog. If you are unclear of what is an "ad" versus what is just something I'm passionate about, please feel free to contact me for clarification.

At the current time, an example of an ad would be anything that says the word "Amazon" or "Neutral Existence".

Thank you for your understanding and respect of this blog's policies.

Sincerely,

Jeanne (aka the exasperated blogger who needed to set the record straight)

---



Let's move onto greener pastures!! :)



Related link:

Sunday, June 29, 2008 Endometriosis Blog: Ground Rules for Comments, Google, and AdSense PLUS My Anticipated Response Time for Comments

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

HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!