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Welcome!
This is an endometriosis blog and so much more!!! The focus here is on coping with various types of chronic illnesses & pain.
Here is just a sampling of the other conditions covered: fibromyalgia, infertility, interstitial cystitis, multiple chemical sensitivity, IBS, vulvodynia, environmental issues, etc.
Please join us here for support and information. Thanks for stopping by to check out my blog!
As I am far too tired to write a post, I decided it was high time to post a video. Loyal readers of this blog may recognize it from when I posted it months ago (or may have seen it in the YouTube video "slideshow" located in my blog's right sidebar).
Just because a condition isn't visible doesn't mean it doesn't hurt!!
(Video posted on YouTube by "booknhorsefreak" on October 10, 2007)
When I first saw this video, it made me cry and gave me chills. When I just came across it again (months later), it did the same thing to me. Whatever condition(s) you may have, you will probably relate to this video on some level. Between the gorgeous pictures, the perfect words that accompany them, the way this whole video just resonates for patients and caregivers alike, and the hauntingly beautiful music on the clip (sung by Natasha Bedingfield)... I have a feeling it will move you as it did me!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
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...
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:
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:
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!
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:
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!!
I'm 44 years old & my endometriosis symptoms began at 13; I was finally diagnosed at 23. In addition to endo, I have multiple other chronic illnesses. My doctors believe many of these are related to my endo. This blog is to reach out to endo patients, other chronically ill patients, & their loved ones.
The typical diagnosis occurs 9.9 years after the onset of symptoms! I have heard many women’s stories: of not being believed by their medical professionals; women who have had their symptoms marginalized or dismissed; women who go from doctor to doctor searching for someone who will truly understand, take them seriously, & help them get relief/manage their symptoms. There are many wonderful health care professionals out there who treat endo patients. Unfortunately, finding them can be challenging.
Due to high volumes of email, I am no longer able to list my personal email account. Please post your comments/questions directly on my blog. Thank you!!
