Category — Interstitial Cystitis

After evaluating several different ideas for kicking off Endometriosis Awareness Month, I decided to go with a simple post to start.

Therefore, I would like to refer readers to a recent post regarding endometriosis advocacy and the media because a number of endometriosis patients banded together, contacted a newspaper that had printed inaccurate information about endometriosis, and it really made a difference.

As explained in more detail in the following post, the newspaper in question printed a letter to the editor which corrected statements made in the original newspaper article (an original article that was, ironically, written by a gynecologist). I truly believe that one factor that may have helped the newspaper decide to print the correction was that the endometriosis awareness petition with nearly 500 signatures on it was sent to the editor of the newspaper. I believe, after many occasions in the past where such letter-writing campaigns were simply ignored by the media, that the petition you see linked from this very post may well have helped make it harder for the paper to dismiss our letters.

If you missed the post (or the two related posts that preceded it, which are linked from this one), here it is:

Endometriosis Advocacy and the Media

If you have already signed the petition to help spread endometriosis awareness and disseminate endometriosis facts in the media, thank you! Perhaps you have family or friends who would be willing to sign it as well?

If you have not yet signed the petition, please take a moment to do so. There is an optional field where you can leave a comment along with with your signature, if you so choose. There are many fields that are strictly optional. For example, if you do not wish to list your city, you may select the N/G or “not given” option for that field. Simply click on any of the royal blue petition logos in this post to sign. Signing the petition is a very quick, easy process.

You don’t even need a pen to sign this petition. If you’re reading this post, you’re just a click away from signing the online petition.

Anyone wishing to support the estimated 89 million women and girls worldwide who have endometriosis may sign this petition. Men and women, young and old… let’s work together to get as many signatures as possible on it.

The petition text reads as follows:

An estimated 89 MILLION women and girls worldwide have endometriosis! “This makes endometriosis more common than AIDS and more common than cancer“, as per Ohio State University Medical Center. (Source: The Ohio State University Medical Center website).

Yet for years it has remained largely “under-the-radar”. The general public has been largely unaware of it – or misunderstands just how very debilitating it can be. When endometriosis IS mentioned in the media, misleading statements may be made (causing confusion for patients and the public).

We have a duty to educate the public about this life-altering illness by spreading factual information… and by recognizing misinformation and taking steps to address that.

Endometriosis can only be diagnosed via a surgical procedure called a laparoscopy.

Endometriosis awareness is vital! It is equally vital that information disseminated about endometriosis be accurate! In spreading myths and misinformation, endometriosis patients are hurt rather than helped.

The purpose of this petition is endometriosis awareness. ANYONE who wishes to sign it may do so. Whether you are male or female, young or old… if you wish to show support for the 89 million women and girls living with endometriosis, we’d be honored if you’d sign this online petition. If you wish to do so, you may include a comment when you sign. Please spread the word about this petition to others!

* Please note that I do not endorse any organizations. Patients are encouraged to do thorough research before supporting any organization claiming to help women and girls who have endometriosis.

Thank you!

Please click above to access the petition.

Won’t you please join those of us who have already signed this petition or ask others to do the same? The more signatures we are able to gather, the better tool the petition becomes when we write in to various media outlets to make them aware of stories that contain inaccuracies. This petition is a tool for spreading endometriosis facts and pointing out endometriosis misinformation.

Since endometriosis has a long history of being portrayed in the media with extreme and persistent inaccuracy, it is vital for patients to speak up when they see such errors. Having a petition like this is very helpful because of the nearly 500 people who have signed it, many have left heart-wrenching comments that any newspaper editor or reporter would have to be touched by in some way.

Let’s keep using this petition the way we did recently with the newspaper mentioned in the link above. By speaking up together, we can make a difference in how endometriosis is portrayed in the media. This is vital for a condition so poorly understood and so riddled with myths and misinformation.

Thank you!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for supporting this blog by shopping Amazon via my ads & spreading the word to others! So many of you have done so in these last couple of months; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

Yesterday, I watched the bipartisan meeting on health reform. The summit was fascinating to me for many reasons but there was a highlight, for me, in the form of remarks made by Rep. Louise Slaughter. She really stood up for women’s health!

Rep. Louise Slaughter

She boldly spoke up for women at the 2/25/2010 health summit

In my mind, her comments can be appreciated by all women and especially any any female patient who has lived with the effects of gender discrimination in relation to medical research (i.e. lack of research on women or lack of investigating illnesses that affect just women) or cost of healthcare that is tied to gender. I won’t even get into a discussion of how common it is for women’s symptoms to be dismissed when similar symptoms would be taken more seriously for males (i.e. heart disease). The point is that Rep. Louise Slaughter stood up for all women and I was just beyond thrilled that she took the opportunity presented by the summit to address these issues.

My thanks to Diana of the Somebody Heal Me blog for posting this video. When I clicked on the link she posted (to the video below), it took me to the Odd Time Signatures site.

Yesterday, I was so thrilled to hear what Rep. Louise Slaughter said that I resolved myself to scour the Internet today to find a video clip of her at yesterday’s summit. Again, Rep. Slaughter wasn’t just speaking up about health reform.

She was speaking up for female patients everywhere and she was shining light on the fact that medical research studies were done almost exclusively on white males up until a startlingly short time ago, relatively speaking. I believe that any patient with an illness that affects women can appreciate the way Rep. Louise Slaughter spoke up for ALL female patients.

As a patient with numerous illnesses that either affect women alone or that affect more women than men, I was absolutely ecstatic to hear Rep. Louise Slaughter articulate what too few people are aware of… and to hear her do so in such a public forum!

There IS gender discrimination not only in the area of medical research but in the very cost of health insurance itself for women vs. men. Before I had even had a chance to locate a video of Rep. Louise Slaughter at yesterday’s summit, I came across a link from Diana that led me to Odd Time Signatures site.

(Video run time 12 minutes and 59 seconds):

Did you miss the summit? I will warn you up front. It’s long. However, you can scroll through the link below and watch parts of it if you choose to. (This video was just a snippet from the summit).

The link below has the summit, in its entirety, broken down into five video parts. You can watch some or all of it at the link below:

Bipartisan Health Care Meeting

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for supporting this blog by shopping Amazon via my ads & spreading the word to others! So many of you have done so in these last couple of months; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

(Photo credit – Getty)

I have written previously regarding healthcare and wanted to take a moment here to post an update on the current situation, for those of you who may not be aware of the status of things at this time.

Rather than re-invent the wheel, I will cite the following post from:

S E N A T U S: Daily Coverage of the United States Senate

See “About Senatus” (taken directly from that site):

Providing daily, non-partisan coverage of the U.S. Senate and the elections which determine its members. This is a private-citizen effort and is in no way affiliated with the federal government.

(Photo credit – Associated Press)

See the following post on the Senatus blog:

Reid Says Reconciliation Likely On Health Reform

According to various news reports, 20 senators have signed so far, calling on Majority Leader Harry Reid to pass the public health insurance option through “reconciliation,” which only needs a simple majority in the Senate. If your Senator is listed as “unknown” on the list below, please consider taking a moment to email or call him/her requesting he/she join the 20 Senators who have already called on Majority Leader Harry Reid, as per above:

Name – ST – Status:

I received the following email on Friday from the Interstitial Cystitis Association (ICA). So I apologize for the short notice. Please take a moment to read it. The ICA is looking for feedback to take to Congress by midnight tonight. All they need is a short paragraph about the impact interstitial cystitis has had on you. I’m sure some of you reading this have IC. Perhaps you can take just a moment to look at this email? This is a chance to educate Congress about interstitial cystitis. Thank you.

Email from the Interstitial Cystitis Association (ICA):

The ICA is meeting with your Congressional representatives next week to educate them about the importance of dedicated IC government funding.

Would you like to share your story with your state leader?
Are you willing to write one paragraph about how IC has affected your life and how the ICA helps you?
Congress is eager to hear the experiences of real people. If you are a patient, caregiver, healthcare provider, researcher, or other individual affected by IC, please take a moment to write a short paragraph about your experience.

Let’s see how many stories we can collect by midnight on Sunday, February 7, 2010.

Please join us in advocating on behalf of the millions of people with IC. Email your story to TakingAction@ichelp.org. The sooner the better so we can compile and deliver early next week!

Thanks for your help!

Barbara Gordon, RD
Executive Director

Here is my letter to Congress:

My name is Jeanne and I have interstitial cystitis. My symptoms started in 1992. It took 12 years to be properly diagnosed. After seeing three urologists, all of whom told me I did not have interstitial cystitis, I finally received a correct diagnosis when I had a fourth cystoscopy with hydrodistention performed under anesthesia in 2004. Since then, I have experienced significant improvement in my symptoms thanks to proper treatment of the condition. I have found Interstitial Cystitis Association (ICA) a helpful source of information on interstitial cystitis. Outside of my physician, Interstitial Cystitis Association (ICA) is my number one resource for information about interstitial cystitis. So, I am thrilled to hear that representatives from Interstitial Cystitis Association (ICA) will be meeting with members of Congress to discuss interstitial cystitis. This often misdiagnosed, under-treated, serious illness deserves better understanding, research, and general awareness. Thank you for taking the time to hear from interstitial cystitis patients like me. I appreciate your time.

Jeanne
http://chronichealing.com/

If you have interstitial cystitis, I urge you to write in to the ICA at the above address by midnight tonight so that your voice can be heard by members of Congress. This is a wonderful opportunity to make our voices heard!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for supporting this blog by shopping Amazon via my ads & spreading the word to others! So many of you have done so in these last couple of months; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

It is too late. I already am. Late. It seems like I’m late on everything both online and in real life. It is maddening. I feel like I can’t ever catch up. It’s always just a matter of how far behind I am on things.

I won’t bore you with the long list of things I’m late on in my real life. My to-do list has reached nauseating proportions. I’m going to need to take some drastic measures to make significant progress.

As far as online matters are concerned, I’m late moderating comments. I’m late answering Facebook messages. I’m late blogging. (This is my first post since Monday. I don’t usually have gaps like that between posts). I’m really late on responding to email.

So, if you are one of the people wondering why I am so slow responding to a comment or an email… please accept this as my apology. It has been a stressful week.

Why? Why am I so stressed out?

I don’t have any big, dramatic news that explains why I am so stressed out. So, I found myself actually asking, “why am I so stressed out? I concluded that a large number of little things or moderately problematic issues have just culminated into one big pile of stress and that stress is on top of “medical stress” (meaning stress associated with all things medical, a type of stress I’ve had plenty of this week too).

So, I’ve had some significant “medical stress” this week but I can honestly say that this – what prompted this post – is other stress on top of that. Does that make sense? Anyone who is chronically ill knows that medical issues certainly cause plenty of stress. Obviously, the illnesses are probably the biggest stressor I have in general.

(Do me a favor and pretend that is a pile of stress. Oddly, I was unable to find a picture of one. I named this “stresswood”)

So, I think what I’m trying to say is that I am stressed by lots of non-medical issues that have popped up throughout the week on top of “medical stress”.

There are many reasons this week has been a stressful one. I won’t belabor the point with an exhaustive list of the many things that have stressed me out this week.

However, since this is a blog about chronic conditions, I will name the conditions that have been flaring up in some way this past week: fibromyalgia, multiple chemical sensitivity, interstitial cystitis, vulvodynia, irritable bowel syndrome, endometriosis, and Raynaud’s. I am too tired to hyperlink all of those conditions. So, if you are interested in reading about any of them, check my “categories” or “search this blog” options in the right sidebar… as most of the conditions I have mentioned have been written about on this blog before.

Needless to say, many of the above conditions trigger others listed above. So I’ve been dealing with the chain reaction syndrome I am very used to by now. So, I just wanted to surface for air long enough to let you know that I am drowning in tasks to do, I am going as fast as I can to catch up, and it may be awhile before that happens.

I have had several wonderful friends remind me in the last few days to practice what I preach and remember to make self-care a priority. So, I am going to listen to my wise, thoughtful friends (too many to list, I’m afraid, but you know who you are!) and try to remember the basics such as relaxing, breathing, and taking breaks. I also want to thank the friends who have given me special support this week. Again, there are too many to list but you know who you are.

Have a wonderful weekend. Peace out.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for supporting this blog by shopping Amazon via my ads & spreading the word to others! So many of you have done so in these last couple of months; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

This is a re-post. My blog has been getting lots of traffic on the topic of interstitial cystitis lately. So, I thought I’d republish a couple of articles.

Over the weekend I did a bladder instillation. As I mentioned in yesterday’s post, it really helped.

Clearly I am having an interstitial cystitis (IC) flare because I just did another bladder instillation. It is very unusual for me to do bladder instillations so close together. The instant relief it provides is beyond amazing.

I am very grateful to have a doctor who knows IC and is experienced at treating it. After 12 years undiagnosed and 3 doctors prior to the one who finally diagnosed my interstitial cystitis, I know it can be very difficult to get a proper diagnosis (even amidst classic symptoms and even when the person, like me, has a commonly co-existing condition to interstitial cystitis… endometriosis).

I am fully aware that in some geographical areas doctors with the expertise mine has simply don’t exist… and I feel badly for those who do not live near health care professionals equipped to diagnose and treat interstitial cystitis. For me, a qualified doctor is within an hour’s drive. Not everyone is this fortunate. I fail to understand why there isn’t better training in medical school about IC so that urologists would be better equipped to diagnose and treat it. The three doctors who told me I didn’t have IC were all urologists. The doctor who finally diagnosed my IC is a pelvic pain specialist who regularly sees in his practice many women who have IC, endometriosis, fibromyalgia, vulvodynia, etc. In other words, he sees patients who have all of the conditions I just mentioned and I have all of them (and then some).

If you have IC or suspect you do, I would encourage you to research to find a doctor closest to where you live who understands interstitial cystitis and takes it seriously.

For more information about interstitial cystitis, please contact the Interstitial Cystitis Association.

Right now, I am grateful that the very sudden IC pain I just experienced is much better simply by doing a bladder instillation.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for supporting this blog by shopping Amazon via my ads & spreading the word to others! So many of you have done so in these last couple of months; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

This is a re-post. My blog has been getting lots of traffic on the topic of interstitial cystitis lately. So, I thought I’d republish a couple of articles.

Hey, I can squeak in another invisible illness post for awareness week.

It’s not September 20th yet! This post was inspired by today’s events.

I have posted this video in the past but I am posting it again because it’s brief, to the point, and helpful:

This will be fairly quick. I am very tired and sore from multiple illnesses flaring up at once but I just had to share some positive news!

The past couple of days, my interstitial cystitis (IC) has been flaring. It is not unusual for my period to trigger bladder pain. To be clear, I have never had endometriosis removed from my bladder. Essentially what happens is that my IC is easily set off by my period.

In any event, I have blogged on previous occasions about interstitial cystitis and how it is a commonly co-existing condition with other illnesses such as endometriosis and irritable bowel syndrome for some patients. (I have all of the above).

After 12 years undiagnosed with IC and having had three urologists tell me I didn’t have it… my pelvic pain specialist diagnosed me with IC during my 4th cystoscopy with hydrodistention.

Since getting my long-awaited diagnosis of IC and beginning proper treatment for it, I have had a huge improvement of symptoms with a combination of oral medication and bladder instillations. I do the bladder instillations at home. This involves self-catheterization to instill the medication(s) into the bladder.

IT’S NOT AS BAD AS IT SOUNDS.

Anyway, I was really hurting earlier and decided it was time to do a bladder instillation, period or not. The good news is that I got SIGNIFICANT relief within minutes.

(Please note: there are a variety of different treatment methods in use by doctors for treating IC. Treatment decisions need to be discussed with your doctor. I purposely choose not to name the medications I take online as a general rule. I am not comfortable naming brands of medications in posts).

So, if you’d like to learn more about bladder instillations and interstitial cystitis, please see “interstitial cystitis” under categories in the right sidebar. (This will pull up IC posts and chronic illness posts. So you may need to sort through a bit to find posts just on IC. I’m still fine-tuning the sorting of the posts from when I switched over to this blog). Alternatively, you could search on “interstitial cystitis” in the search box (also in right sidebar).

One last note… Due to my vulvodynia, my pelvic pain specialist wisely prescribed me PEDIATRIC catheters, which are narrower than adult catheters. I have never self-catheterized with an adult catheter and don’t ever wish to. So, if you have IC or suspect that you might… this might be something to keep in the back of your mind the next time you talk with your doctor. (Obviously, I am not giving medical advice. I am simply sharing something that has been enormously helpful for me).

Last but not least, I always like to mention this organization when I blog about IC because they are fantastic!

—–> Interstitial Cystitis Association

I AM VERY GRATEFUL FOR THE RELIEF TODAY’S BLADDER INSTILLATION HAS GIVEN ME!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for supporting this blog by shopping Amazon via my ads & spreading the word to others! So many of you have done so in these last couple of months; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

This post is a partial reprint of an article I read on The Canary Report.

While the full post there was more detailed and got into specifics involving claims made by companies targeting multiple chemical sensitivity (MCS) patients, for the purposes of this post I have decided to focus on the ten warning signs of a scam, as compiled by Lourdes Salvador and Linda Sepp, and as previously published HERE.

This list, in my opinion, is applicable to nearly any chronic illness patient because the tips for spotting scams listed here are so universally used. This fantastic list is far more concise than I could have written. Yet it captured something I have been wanting to blog about for some time. Longtime readers know that I have blogged about scams and false cures before. However, this list nicely sums up what you, as a chronically ill patient, can be on the lookout for.

Reprinted with permission from:

Lourdes Salvador of MCS America
AND
Linda Sepp, a contributor for The Canary Report

Ten Warning Signs of a Scam:

1. The Promise Of A Quick And Easy Cure

2. Presence Unproven Patient Testimonials & Emotional Appeals Instead Of Science

3. Claims To Cure Many Ailments Which Have No Cure In Medical Science

4. It’s Not Sold In Stores

5. It Has Undisclosed Ingredients Or Content

6. You Have To Keep At It To Get Results

7. It Doesn’t Work Because You Did It Wrong

8. Science Hasn’t Even Bothered To Discredit It (No Threat To Pharmaceutical Sales)

9. The Seller Lacks A Medical Degree Or Similar Qualification

10. It’s Too Good To Be True

Copyrighted © 2009 MCS America

~~~~~~~~~~~~~~~~~~~~~~

I am very grateful to Susie Collins for posting about this topic and to Linda Sepp and Lourdes Salvador for writing about this very important topic!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for supporting this blog by shopping Amazon via my ads & spreading the word to others! So many of you have done so in these last couple of months; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

Over the weekend I did a bladder instillation. As I mentioned in yesterday’s post, it really helped.

Clearly I am having an interstitial cystitis (IC) flare because I just did another bladder instillation. It is very unusual for me to do bladder instillations so close together. The instant relief it provides is beyond amazing.

I am very grateful to have a doctor who knows IC and is experienced at treating it. After 12 years undiagnosed and 3 doctors prior to the one who finally diagnosed my interstitial cystitis, I know it can be very difficult to get a proper diagnosis (even amidst classic symptoms and even when the person, like me, has a commonly co-existing condition to interstitial cystitis… endometriosis).

I am fully aware that in some geographical areas doctors with the expertise mine has simply don’t exist… and I feel badly for those who do not live near health care professionals equipped to diagnose and treat interstitial cystitis. For me, a qualified doctor is within an hour’s drive. Not everyone is this fortunate. I fail to understand why there isn’t better training in medical school about IC so that urologists would be better equipped to diagnose and treat it. The three doctors who told me I didn’t have IC were all urologists. The doctor who finally diagnosed my IC is a pelvic pain specialist who regularly sees in his practice many women who have IC, endometriosis, fibromyalgia, vulvodynia, etc. In other words, he sees patients who have all of the conditions I just mentioned and I have all of them (and then some).

If you have IC or suspect you do, I would encourage you to research to find a doctor closest to where you live who understands interstitial cystitis and takes it seriously.

For more information about interstitial cystitis, please contact the Interstitial Cystitis Association.

Right now, I am grateful that the very sudden IC pain I just experienced is much better simply by doing a bladder instillation.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for supporting this blog by shopping Amazon via my ads & spreading the word to others! So many of you have done so in these last couple of months; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

Meet Emily:

When I began blogging in June 2008, I found a powerful video and contacted Emily (who had posted it). Those of you who read my previous blog, “Jeanne’s Endo Blog”, may recall seeing the video posted in its sidebar. Emily created it and graciously agreed to guest blog here about it. With 2,727 views on YouTube, this video is obviously resonating with many people. Emily has fibromyalgia and ME/CFS but I believe that just about anyone dealing with chronic illness/chronic pain can relate to this video. I appreciate her taking the time to write about how this video came to be.

Emily’s “project”… Behind the video:

Hi. Some of you may know me as caiquecrazy from Jeanne’s Endo Blog. Others may know me as the user booknhorsefreak, from YouTube. Two years ago, I published a slideshow on YouTube titled Don’t Judge – The Saga of Chronic Pain. It was a little pet project I put together one day as I was sitting home, reading a fibromyalgia/chronic pain support group site, and feeling increasingly sorry for myself. I was at a low point in my life – I was feeling desperate, like my life was slipping away and I was being held captive by something I had no control over – chronic, debilitating pain.

I had found some letters that were titled ‘Letters to Normals’ that outlined the rage, the pain, the rejection, and the frustration that people who suffered from chronic pain had written in an effort to explain their situations to the ‘normals’ – the healthy ones. I sat for hours sifting through notes and letters, crying in relief that someone else got it. That the person who had put pen to paper actually understood my point of view. This is what brought around the idea of the video.

I have a background working with horses. Before the pain came to be a constant part of my life, horses were my home. I worked on a ranch in exchange for riding lessons, and took refuge in their strength. I am small in stature, and being able to work in unison with an animal that could easily overpower me taught me lessons in strength, emotion, steadfastness, and partnership. When at first I began to experience pain, I pushed through and continued to ride my beloved equines.

However, I began to lose my ability to ride safely – my balance became off, my pain threshold lowered, and I no longer had the strength to boost myself into the saddle. After a while, I simply stepped away from horses – not being able to ride was like tearing my heart out. I learned to watch on the sidelines and observe the body language of horses – it thrilled me to watch them in action, and I learned to pick up on the small things that riders generally don’t pay attention to. I was able to float into a dreamland of watching and waiting, fueled by my desire to one day incorporate horses into my life, whatever the price.

As I made this video, I was using an electric scooter to get around my school campus, because my manual wheelchair was too hard to maneuver with my failing rotator cuffs. I was going to the doctors religiously, and they had me hooked up to a constant tens unit in an effort to help relax my muscles and relieve some of the pain. I isolated myself quite effectively from the normal crowd, and withdrew into my world that was full of books, daydreams, and computers. I became increasingly depressed and frustrated with my situation as I silently celebrated my 6th year of constant chronic pain. At the time, I was only 18 years old.

Despite not having worked with horses for about 3 years, they still galloped across my dreams and stamped their way into my heart. They were a sort of muse for me, every creative piece I wrote or dreamed was centered around something equine. I often wished they could gallop away with my fears, and replace my emotions with joy and peace. When I sat down to create this video, I wasn’t trying to be creative or even symbolic – I was trying to put into words the thoughts that were going around my head.

I made a list of words that I use on a regular basis to describe my condition. Suffering, pain, sadness, despair, loneliness, anger, hopelessness, defeat, broken, lost, anguish. I melded these words into silent riders, situated on horses – words to be taken away and carried into the atmosphere, never to be absorbed by me again. Through my tears while making this video, I derived a mission statement. I boldly stated that ‘I will not be defined by my pain’. From there – the video took flight.

I made a rider crafted out of the word freedom, and placed on that on a cantering horse. Following that rider are images of wild herds running free – the best site in the world, the site that never ceases to soothe my soul. The rest of the images are riderless – they need no riders to saddle them with the weight of the world. They are free.

I set this all to a song called “Wild Horses” by Natasha Bedingfield.

The lyrics are well suited to the video, saying:

“I see the girl I wanna be
Riding bare back, care free along the shore
If only that someone was me
Jumping head first headlong without a thought
To act and damn the consequence
How I wish it could be that easy
But fear surrounds me like a fence
I wanna break free”

[Editor's Note: See this link for complete lyrics to Wild Horses by Natasha Bedingfield].

I hastily submitted the video to YouTube before I lost my cool and backed out. It’s been up ever since, and for the past 2 years I have been receiving thank you notes from various viewers, thanking me for putting into words and pictures what they could not begin to explain.

A silly little imaginative whim in my mind formed into an outlet that helped me bridge some ties to the chronic pain community.

Emily recently traveled to Nicaragua

Since that video, much has changed. Yes, I do still suffer from pain. Yes, I do have restrictions and limitations on my abilities. But I don’t let it stop me. I’ve stopped using my wheelchair and scooter – they branded me more then I could ever want. Instead of staying home to bury myself in another book, I got involved in the community. I push myself to my limits on a regular basis, and surprise myself when I sometimes surpass what I believe even I was capable of. Recently I got back from a 10 day mission trip in the heart of Nicaragua. I hiked miles around a volcanic crater; something that if you had told me I would do 2 years ago, I would have laughed. Sometimes, I go and re-visit the pictures, because I can’t believe it actually happened. I paid dearly for that hike – but I refused to miss out on a once in a lifetime experience. I chose to live life, and happily take the consequences that came with it. As a result, I have memories that even on the most pain filled day, I can look back on and remind myself of what I accomplished.

Emily literally climbed this mountain…………

I hope you enjoyed the video. I honestly can’t say I enjoy it – it reminds me too much of what I once was, and how low that time of my life was. However, it also brings me comfort – whenever I receive a ‘thank you’ letter from an anonymous reader, letting me know that my silly little pet project helped them, it brings a smile to my face.

I’m glad I can provide words to others, the same words that for so long I attempted to elude. Now I embrace those words with open arms, and I set them free.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

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