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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!
It prompted me to drop what I was doing for Endometriosis Awareness Month to write this post. There was a moving interview with actor John C. McGinley speaking on the Bonnie Hunt Show.
YouTube video description:
Hear actor John C. McGinley talk about why the word 'retard' is so hurtful and why everyone should stop using it in everyday conversation. This is from an interview on the Bonnie Hunt Show on March 2, 2009.
Please check out the Special Olympics website and take the pledge, grab the badge and blog about this campaign. We can make a difference for the better! Please join me in this great effort.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
I thought it was time to lighten things up a bit. Sometimes taking a break from information-gathering, doctor appointments, and stress can help us cope better with endometriosis & other chronic illnesses.
I'd like to start by sharing a gorgeous photo I found awhile back:
Photo used with permission from Mimbrava - www.Flickr.com
This red rose photo ties together nicely with a post I've been wanting to write for awhile now. As many of you are already aware from what I have written previously I am a huge fan of Tori Amos, the musician.
It just so happens Tori has endometriosis. So I'm using that as my excuse to write a post featuring some lyrics from her song: 'Almost Rosey' (from the American Doll Posse CD).
Before I get into any lyrics or my interpretation of them and what they do to inspire me and to give me strength during the especially tough times, I just want to lay the foundation for WHY I'm writing about this here on the blog... (other than my love of Tori Amos' music).
Over 7 years of facilitating a local endometriosis support group, I have noticed that MANY of our support group members share a common thread. For some it has to do with upbringing. For some it's a personal philosophy. For others, it's the only way they know how to cope with this challenging illness.
The common thread I've noticed for most endometriosis patients is that they often:
Put others first before themselves
Forget to practice self-care on a frequent enough basis to maintain their health (or progress to a greater state of wellness)
Often they "run themselves totally ragged"
Let me be clear that I don't sit in judgment of anyone (!!) and I know how very difficult it is to balance home/personal life, work life (for those still well enough to pursue a career outside the home or those who manage to work from home), social life/obligations, chronic illness(es) and the many other commitments that take up our precious time nowadays. There never seem to be enough hours in the day!
An endometriosis patient may be:
employed in the traditional workforce
disabled
unemployed
a stay-at-home-mom (SAHM)
a work-at-home-mom (WAHM)... [I know -- all moms work at home. By WAHM, I'm referring to women who work in the home via telecommuting, running their own businesses, etc...]
I have observed that ALL women nowadays (that I know) are feeling the pressure of many demands on their time and this typically just becomes much *more* challenging for the chronically ill.
OK... back to some of the music that gets me through some of my roughest days! I should point out that the music that works for me may not be most effective for you for coping with illness, stress and/or anxiety. The important thing is that most of us have SOME sort of music we find relaxing, inspirational, supportive, or even cheerful. Sometimes the lyrics really strike us and provide extra comfort. Sometimes it's the melody, the beat, or maybe an outstanding vocalist. Many times it's all of the above.
OK. It's time for me to list the lyrics for "Almost Rosey" and explain what they mean to me personally. They may certainly mean different things to different people but I'll talk about how the lyrics strike me. Obviously this is just one interpretation.
*Let me give just a bit more background on why I'm including lyrics for this particular song.*
Many women I know (from my local endometriosis support group, healthy friends & relatives, former co-workers, blogger friends, etc.), myself included, have times when they really push their limits physically, mentally, or both! Self-care is key. A support network of some kind is key.
You may have heard phrases like "grin and bear it" or "put on your happy face" or "be strong/don't let 'them' know they've gotten to you".
While there are certainly times in life when we all need to do things we don't want to do, to even do things we're concerned may cause injury or exacerbation of existing illnesses, and to do things that are simply necessary for basic functioning... there are definitely other times when it's in our best interest (and/or that of our loved ones... whether they know it or not!) NOT to push too hard and NOT to overwork! Knowing when to back off and when to push ahead is a tricky balancing act. Taking pains NOT to overdo can prevent suffering & sometimes even permanentpain afterwards, etc.)
Many women have a REALLY tough time slowing down, pacing themselves, and saving precious energy for the things that REALLY matter!
OK. Here's where this song is one of my favorites to play when I need a pick-me-up.
Here is a video clip of an amazing live rendition of this beautiful song:
Below are the lyrics to "Almost Rosey". I have bolded portions I find particularly helpful to me for insights into how people (women and men) sometimes "put on a happy mask", isolate themselves from support when they need it most, etc. My comments are in italics.
I should note that simply reading the lyrics off the page may sound anything but "rosey" or cheerful. However, knowing Tori's body of work for over 15 years, reading between the lines of the lyrics, knowing she is about as far from a "phony" or "fake" person as can be, and hearing the beautiful melody and soothing sound of the music on this song softens it immensely. Tori is a complex person and her lyrics can be deceiving. For example, her talk of putting rose colored glasses on to cope with things is NOT, in my opinion, implying that one should stick his/her head in the sand!! Quite the opposite... Tori bravely faces things head on! My comments on the lyrics will be in italics next to the lyrics I've bolded in the song...
+++
» 'Almost Rosey' Lyrics
[This Section features Lyrics of the Song 'Almost Rosey' from the Album American Doll Posse]:
Just a minute of your time Yes I've been known to delude myself So let me put those rose colored glasses to the test (I believe this is her way of saying let's cope with these problems rather than avoiding them).
Now is this real enough for you 'cause blondes here don't jump out of cakes If that never impressed you much Come board this lunatic express
Just why do they say Have a nice day anyway We both know they wouldn't mind If I just curled up and died Let's not give that one a try (I think this section is Tori's way of observing how fake people can be when they exchange pleasantries they don't mean, when they act insincerely, and when they generally disregard -too often - others' well-being).
Chin up put on a pair of these roseys Raise those blinds Chin up a happy mask was never Your best disguise Chin up put on a pair of these roseys In no time you will feel almost fine (I believe Tori is offering coping skills to either herself or someone else. She seems to be trying to fight the urge to isolate and "close the blinds". She recognizes that stuffing emotions and putting on a "happy mask' is not healthy. She wants things to start looking up and believes things WILL get better).
Almost rosey
Now some girls here will huddle with No not footballers that are rich But will confide in small white sticks He bats as The Virginian Slim
Then I tried once to comply With an authority that would Subsidize my wild side But at this altar was sacrificed
Yes you can laugh a femme fatale In a bride's dress now married to The effortlessness of the cracks That lie now in between the facts (Here again I believe Tori is speaking out against dishonesty in any form... including being phony/fake or insincere).
Now about when violet died The cause still unidentified She thought her love would be enough But you can't seduce seduction
Her tentacles of endless want Reach through my corridors And tempt me to taste of her power I sober with the witching hour
And when I hear of one more bomb Yes we have all been robbed of song And nightingales who throw their arms up When is enough enough? (To me this passage is pro-peace, for saving the Earth from irreparable harm caused by war and environmental issues. Obviously birds don't have arms but I think the point is clear that she's concerned about the condition the Earth is in and wants very much to improve it).
--- [ Almost Rosey Lyrics @ http://www.toriamoslyrics.org/ ]
You can learn more about mandalas at the above site. Many more mandalas can be found there.
Today I wanted to post something simple but meaningful. I wanted to "lighten things up" with the beautiful image above... and I wanted to post a "Gratitude Moment" to two wonderful women.
I'd like to thank these two very special people!!!
These are two women who have consistently posted thought-provoking, supportive, insightful, hopeful, positive comments on this blog. If you look through the comments on most articles on this blog, you'll see one or both of them listed as having commented:
Alicia (aka "yaya") Mckay k
These two women have been incredibly supportive of this blog and I wanted to dedicate a "Gratitude Moment" to each of them!
Each of them is also a blogger.
Alicia has endometriosis and infertility. She occasionally includes these as topics on her "Random Thoughts" blog. (She descibes her Yayastuff blog as --- "Random thoughts, Daily Thoughts, Life, Friends, Family, Nanny Job"):
Mckay k writes two blogs. One is on chronic illness and the other is about her Koi Pond/Garden. (She is an avid gardener and also has multiple chronic illnesses):
These two women are strong, intelligent, supportive, helpful, and kind. I am grateful to have them in my life. One lives nearby and another lives far away. Regardless of who lives where, both of these women have had a profound impact on this blog with their frequent comments and great observations/information!
I would like to publicly thank each of them for helping me be a better blogger and a better person! They are both inspirational to me!
THANK YOU Alicia! THANK YOU Mckay k!
PLEASE NOTE:
This was written last week. I was unable to access my computer and post this at that time. I will probably not be able to update my blog regularly for awhile. I will get back on schedule as soon as possible but wanted to finally get this posted.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
According to Mckay k, an endo blog reader, there will be an ABC news special on tonight about Dr. Randy Pausch!
I highly recommend tuning in. I also recommend having a box of tissues handy. (I went through plenty during Diane Sawyer's interview with Dr. Pausch several months ago).
See Diane Sawyer talking about Dr. Randy Pausch here:
I checked the ABC website and it appears this show will air at 10:00 pm tonight. Check your local listings to be sure.
This is a follow-up to the following post: "Sunday, July 27, 2008 A Tribute to Dr. Randy Pausch (The Last Lecture)".
If you get a chance to watch this program tonight, I guarantee it will be worth your time!
Thank you, Mckay k, for making me aware of tonight's special on ABC.
UPDATE:
Here is Randy Pausch's website for more information about pancreatic cancer and his inspirational battle with it. It includes more video clips, including his absolutely riveting testimony before Congress:
On July 25, 2008, a very special man named Dr. Randy Pausch passed on.
His legacy will remain in the hearts and minds of the millions of people he touched around the world.
You may have seen Randy Pausch on Oprah or watched his interview with Diane Sawyer.
Or you may not have had the pleasure of hearing this inspirational man speak about life, living, and dying with dignity and grace.
For those who have not had the privilege of seeing "The Last Lecture", I'm going to include the video of it here. It was posted on YouTube after he made his last lecture at Carnegie Mellon University (where he was a professor) and it since then became well-known around the world.
First there is a brief video clip tribute to Dr. Pausch. Then Dr. Pausch's the "Last Lecture video" is about an hour and 16 minutes.
I assure you that if can set aside the time to watch his lecture it will be well worth your time!
First, here is the tribute video that was posted on YouTube after his death by "khoof7". It was posted on YouTube on July 25, 2008 (running time 1 minute and 20 seconds):
The full video of "The Last Lecture" captured the attention of people around the world. I hope you'll find it as inspirational as I did... and as millions of others around the world have as well.
Here is the description listed on YouTube of the "Last Lecture" video (posted by "carnegiemellonu":
Carnegie Mellon Professor Randy Pausch (Oct. 23, 1960 - July 25, 2008) gave his last lecture at the university Sept. 18, 2007, before a packed McConomy Auditorium. In his moving presentation, "Really Achieving Your Childhood Dreams," Pausch talked about his lessons learned and gave advice to students on how to achieve their own career and personal goals. For more, visit www.cmu.edu/randyslecture.
Here is the video of "The Last Lecture". Its running time is 1 hour and 16 minutes and it is worth making time to watch it! It may well change the way you look at your life!!
Clearly, Randy Pausch's story touched many lives and inspired millions of people to live with purpose, to make a positive difference in others' lives, and to have fun while doing it. The legacy he leaves behind for his family is tremendous.
He painstakingly videotaped large amounts of pictures so that his young children will be able to see the videos as they get older and can better understand his life and his death.
Randy's wife was interviewed by Diane Sawyer as well. Jai Pausch's grace and eloquence in the face of such a tragic diagnosis/prognosis was awe-inspiring. Clearly Randy and his wife were soul mates.
He obviously did everything he could to prepare his family for what would happen after he passed on, as anyone who saw the moving interview with Diane Sawyer can attest to.
His bravery, positive attitude in the face of terminal illness, and determination to leave a meaningful legacy for his family (and for the world) will live on.
Randy Pausch made a meaningful, hopeful, positive impact on the world.
Here is the link for the Diane Sawyer interview with Randy Pausch:
The same link as above will take you to video of Randy Pausch delivering the commencement address to the Class of 2008 at Carnegie Mellon University before his death.
If you are interested in learning more about Randy Pausch, his book "The Last Lecture" is located in my virtual bookcase in the right sidebar. Just look for the My Shelfari bookcase and click on "The Last Lecture".
UPDATE:
Here is Randy Pausch's website for more information about pancreatic cancer and his inspirational battle with it. It includes more video clips, including his absolutely riveting testimony before Congress:
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!!
