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11/26/2008

'Jeanne's Endo Blog' Is Featured In Interstitial Cystitis Association's Newest Cafe ICA Newsletter!!

Recently I had the pleasure of speaking with Penny Allen who is a Medical Writer for The Interstital Cystitis Association.

I had previously written here about our conversation regarding interstitial cystitis. (We specifically discussed self-catheterization and bladder instillations as a treatment method). Please see related links on IC at the bottom of this post.

The latest edition of Cafe ICA (November 2008 Cafe ICA, Volume 8, Number 11) was published today.

To sign up for the Interstitial Cystitis Association's Cafe ICA (a free online monthly news digest), just click here:

Cafe ICA (see left side of screen to sign up)

When I was first diagnosed with interstitial cystitis, I joined the Interstitial Cystitis Association and found them very helpful and informative!

To learn more about the Interstitial Cystitis Association and/or to become a member, just go to their website:

Interstitial Cystitis Association

The ICA has more in-depth articles in addition to the free monthly Cafe ICA digest mentioned above. So check out their site for more info.

Here is today's mention of this blog from the Cafe ICA online digest!

(November 2008 Cafe ICA, Volume 8, Number 11)

Endometriosis Blogger Makes the IC Connection

Just as bloggers have transformed political news, they are also transforming health news. Newspapers, magazines, and TV have reported much more on IC in recent years. But now, IC and the ICA are also getting reported on in the blogosphere.

Blogs by savvy patients help raise awareness every day and get good information out to those like them, like Jeanne's Endo Blog. The blog is mainly about endometriosis but also about associated conditions, including IC. In fact, a substantial share of IC patients have endometriosis (estimates range from 30 to 85 percent) and vice versa. And sometimes, IC is misdiagnosed as endometriosis. This blogger knows both well, and on September 19, 2008, she put the spotlight on the ICA and its work. She took note of the ICA's Annual Report for 2007, a year that brought much more awareness that IC doesn't travel alone. Now, major research effort is focused on the connections between the conditions in the hope of homing in on the cause and better treatments. She has also blogged about the PBS documentary "Interstitial Cystitis: Private Pain," Interstitial Cystitis Awareness Week, and Bladder Health Month.

In addition, Jeanne keeps her finger on the news pulse of many other related conditions, such as fibromyalgia and vulvodynia, and on awareness and support efforts from all over the world. Often, she just plain inspires, pointing her readers to moving art, poetry, and thoughts, such as this:

"Life's most urgent question is: What are you doing for others?"
-Martin Luther King Jr.

Please note that there are over a dozen links on IC on this blog but here are a couple of related links:

Friday, November 7, 2008 Endometriosis Blog: Conversation With Penny Allen Of The Interstitial Cystitis Association About Bladder Instillations And Self-Catheterization


Wednesday, October 22, 2008 Endometriosis Blog: Interstitial Cystitis Awareness Week October 20th-26th, 2008 (RE-POST)

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

21 comments:

Maureen Hayes said...

Jeanne,

CONGRATULATIONS!!! I have been a member of the ICA for years and have always found them to a wonderful group. I am happy and proud for you, your blog is always full of good information and deserves the recognition! What a great Thanksgiving treat.

Maureen

Jeanne said...

Maureen,

THANKS!!! I love ICA too. They are a great organization. Thank you so much for the kind words. I'm grateful to have the opportunity to help other patients. :)

Jeanne

Yaya said...

Wow Jeanne! That is so awesome!!!

Jeanne said...

Alicia,

Thanks!!

Jeanne

J said...

Jeanne,
Congrats!! I'm glad you got the recognition, and I'm glad that more awareness of IC is getting out there :)
J

Jeanne said...

J,

Thanks!! I'm happy anytime we can increase awareness about chronic illnesses like IC, endo, fibro, vulvodynia, etc.

Jeanne :)

Mckay K said...

CONGRATULATION Jeanne!

Your blog contains so much helpful information. It is good to see your hard work toward publishing the truth recognized.

Jeanne said...

Mckay k,

THANKS! I appreciate your kind words, as always.

It's great to have the opportunity to share my personal experiences of interstitial cystitis with others.

After 12 years undiagnosed, I am now receiving appropriate treatment that gives me significant improvement of my symptoms.

If by sharing my story, I can help others... that makes me happy.

I think patients sharing their personal experiences with fellow patients is such a powerful thing; I know how grateful I am to all of the patients who have helped me with their generosity in providing me information that has enabled me to improve my quality of life.

We're really fortunate to have resources like blogging to share information and support with each other through managing difficult illnesses!

Jeanne

Jannie said...

Jeanne,

Congrats on the Interstitial Cystitis' feature. You are a great blessing to so many of us and more than deserve the recognition.

Jannie

and HAPPY THANKSGIVING!

Tracee said...

I can't tell you how impressed I am by what you have done with this blog since you started it. Unbelievable. Very proud.

Jeanne said...

Jannie,

Thank you so much. I am blessed to have met so many wonderful bloggers like you... who are supportive, positive, funny, and just plain nice!

Having chronic illnesses may not be fun... but meeting people like you is! :)

I never would have met you if it weren't for our blogs. So I am thankful that blogging has given us the opportunity to connect.

Your blog provides one of the most valuable commodities out there... a great sense of humor. "Funster" really is the perfect name for you because that's what you are... fun!

At the same time, you are not afraid to tackle serious subjects on your blog on occasion (i.e. the serious impact that endometriosis has had on you).

Laughter is the best medicine and you definitely make me laugh.

That (combined with your unending support) means so much to me. I am thankful to have a such a great "blogging friend".

Who knew when I started blogging that I would meet so many incredible people like you?

Your positive energy helps many!

Jeanne :)

Jeanne said...

Tracee,

If only I could be as concise as you... :)

As you know, that's not my writing style (especially when I'm emotional or passionate about something).

So indulge me in a long-winded response to your thoughtful comments because what you said means so much to me... and that makes my reply especially "wordy" (even for me).

It's only because I respect your opinion so much that I feel compelled to give such a thorough response... so that anyone reading this will have some comprehension of how grateful I am to have met you through your blogs.

Your praise means more to me than you could possibly know. You were the best mentor a blogger could ever wish to have.

If I hadn't accidentally stumbled upon your blogs on that pain-filled night of insomnia just a few months ago, I wouldn't have gotten "hooked" on reading and commenting on your blogs daily.

If I hadn't gotten so engrossed with your blogs, I never would have really understood blogging anywhere near the way I do now. (I still have lots and lots to learn, of course, but you taught me a great deal).

It wasn't until I discovered your blogs that I so much as knew how to post a comment (until I poked around your blog a little bit and figured it out). :)

I guess you could say, in hindsight, that all of my reading and commenting on your blogs gave me "practice".

I miss reading your blogs every day. I know you understand that there are so many hours in a day & that I can't spend the kind of time I used to "camped out" on your blog AND write mine simultaneously... but I still do miss all of your witty comments (and your often hysterical sense of humor).

Your snappy replies and attention-getting, thought-provoking writing really inspired me to step out of my "comfort zone" and take a risk.

Once I found your blog I quickly became "hooked". By reading your posts, reading the comments left by your readers, and commenting myself, I got used to the concept of blogs in general.

After following your blog for awhile I began to envision what it would be like to write a blog of my own.

I didn't voice this idea to anyone at first... even my husband. I was a bit apprehensive because I didn't know if I'd be able to blog regularly due to the nature/number of my illnesses and the extreme limitations they give me.

Within a matter of days of each other, both you and my husband asked me if I had considered writing my own blog.

I honestly don't even remember which one of you brought the subject up first. I just know that in the span of 2-3 days, you had both asked me about it.

It struck me as interesting that you both asked me this when I was preoccupied with the idea myself but hadn't voiced it.

(It is unusual for me to keep "mum" about anything, as any reader of this blog can plainly see! However, I had some very real apprehension about tackling a project as big as writing a blog because I had an idea of what kind of blog I wanted to write and I knew it would probably get pretty intense)!

Well, I was right about the "intensity factor". The amount of time I spend blogging far exceeds what I ever dreamed I could tackle. However, blogging is so rewarding that I must confess it's a bit "addicting".

I have to say that it has been an unbelievable opportunity to network with SO many thoughtful, supportive, and passionate people!!

Your blogs inspired me by demonstrating how much difference one voice could make. You showed me than one person's voice really can make a positive impact in the world.

Your courage in tackling "taboo" topics gave me courage to do the same.

While your blogs don't pertain to health topics, you certainly tackle subjects that aren't always the easiest subjects to talk about.

I knew that I would need courage to open myself up in order to talk about the very personal, emotional health issues covered on my blog.

So your straightforward and downright fearless manner inspired me to speak out publicly on the Internet.

In 7 years as a local endometriosis support group leader, I had plenty of practice REALLY opening up in small groups.

However, I wasn't sure I was in the proper emotional place to "make that jump" into blogging about such potentially intense topics as those covered on my blog.

The immense amount of support and encouragement you provided when I started to seriously consider writing a blog is immeasurable. Your generosity with your time and your positive, supportive spirit empowered me to "jump in with both feet".

Since your specialty is empowering women and girls, it did not escape my attention that you went out of your way to mentor me: providing information & tips, answering my many questions, and simply educating me about some of the basics that go into writing a blog.

As poor as my health is, I never dreamed that I would be able to write as much as I have in the last few months. Writing a blog is therapeutic. Networking with other bloggers is fabulous. Helping others is very rewarding.

Sharing my painful past health-related experiences in an effort to potentially help others minimize or prevent similar painful experiences really gets my juices flowing.

You may recall that one of my biggest concerns going into blogging was the potential for "burnout" and the concern that doing it might adversely affect my health.

While I certainly (!) have my moments of overdoing and "pushing the envelope" (and while there are times when I catch myself and realize I need to back off the blogging for awhile), writing a blog has been a really fantastic experience overall.

Between the fact that writing it distracts me from some of my pain, helps me find a channel on which to be productive, and connects me with so many amazing people... I'd say my energy level overall is higher than before blogging -- on most days.

I never would have dreamed this would be the case (and certainly not all days are like this)!

Interestingly, some of my most prolific days are the ones I feel the sickest. (Other days when I'm too sick to blog, I just force myself to stay away from the computer). :)

I never truly knew how cathartic writing would be.

It's great, though, that blogging hasn't just totally sapped me of the little energy I have. It seems to generally do the opposite. (Having a purpose is a real motivator)!!

So, overall, I think my energy level is a bit higher than pre-blogging. (Fibromyalgia flare-up days blow this theory - !!! - but I'm talking about what happens overall).

This energy boost is despite the fact that I work 7 days a week either writing my blog & responding to readers' comments... or working on the "behind the scenes" blogging activities with which you are all-too-familiar.

I never could have fathomed I'd be able to work 7 days a week on the blog!! Due to my illnesses completely preventing me from working a "traditional office job" OR working outside the home (at various other jobs I had tried to do -- before they quickly landed me in the hospital)... I never imagined how much I'd be able to do with the flexibility I have working on my blog at home.

To have you use terms like "impressed", "unbelievable", and "very proud" is the ultimate compliment to me. You made my day and brought tears to my eyes!

You work so hard, you care so much, and your passion is contagious.

I am truly thankful that your blogs enabled me to meet you!

I hope you had a wonderful Thanksgiving!!

Jeanne :)

Tracee said...

Wow. Thank you, Jeanne.

I'm a victim of my own success. I empowered you and Ashley - both my best commentors to leave me and pursue their own passionate writing.

Can't bring myself to regret it. I knew this would bring you less pain - passion and unleashing your inner power always does. Martha Beck has a theory that many times chronic illness is God's way of getting a person's attention - right before they accept their path and find their Purpose. Thought of all the women I know who this seems to ring true for, including yourself. The living of the purpose releases them of pain.

http://marthabeck.com/blog/?p=88

Jeanne said...

Tracee,

So you started out your comment making me smile... as is so often the case when I read what you write. Then you identified me as one of your former "best commenters". :)

Then your generosity of spirit shines through and you show your selflessness... After that long chat we had several months ago, after reading enlightening materials & watching thought-provoking movies, and with a dash of "Oprah-wisdom" tossed in for good measure, I have known for quite a long time that I needed to find my "purpose" and live the "authentic life" you hear people talk about.

For 7 years, a big part (certainly not all) of how I fulfilled my purpose was to be a local endometriosis support group leader. When I started blogging, the support group was still as it had always been... holding monthly meetings that have helped a number of patients get relief, validation, understanding, and support.

Over the course of this last late summer/early fall, it became clear to me that holding meetings on a monthly basis was no longer practical. (Very long story short... we have some women who are extremely enthusiastic about the support group but are typically unable to attend our monthly meetings... either because they are too sick to make it out of the house/find the energy after a day's work, because they have to work at the time meetings are held, whether they have scheduling conflicts that are unavoidable, etc).

Anyway, it was a very painful decision to discontinue our monthly meetings. (I wrote a whole post about this agonizing process elsewhere). However, it was the right decision. We are still a group. We may not meet monthly but we are still in touch, we have each other's contact information, and basically anyone can call a meeting anytime they want. We just won't be meeting monthly at our former meeting place anymore.

When I began blogging on June 1st, I had no idea that my local endo support group's monthly meetings were about to stop happening.

While it was a bit of an undertaking (to say the least) to start blogging and keep acting as a support group leader with my various illnesses, I felt a strong urge to start the blog.

The conversation you and I had really helped give me the "nudge" I needed to have the faith to just do it.

The end of our 7 years worth of monthly meetings (locally) has morphed into this blog... that anyone with Internet access can read. This was bittersweet at first but it's getting ‘less bitter’ and ‘more sweet’ all the time.

I can now look back and realize that the demise of the monthly meetings does NOT mean we don't still have a local endo support network. We do.

Also, new local patients have still been able to find us by email/phone regardless of the monthly meetings stopping. (This was one of my biggest fears... that newly diagnosed patients - or patients who had just heard of our group - wouldn't be able to find the support they need... because I know the need is out there).

I'm no longer worried about new members missing out on the support they want and need. We have many local support group members who aren't going anywhere! :)

As far as the blog... the timing was very interesting in that the blog started "phasing in" as the monthly meetings locally started "phasing out". In a way it was perfect timing (though it didn't feel like it at the time).

I believe I'm doing what I'm supposed to be doing right now. It doesn't mean it's always easy or fun. (In fact, the "bad" days still greatly outnumber the "good" days regarding pain and financial problems tied to my illnesses and staggering medical debt).

However, I have a strong sense that I am on the right "path". No matter how much pain I'm in or how sickened I am by the bill pile, I feel like I must continue on the path I'm currently following at this time.

I read your link to Martha Beck's blog. I sobbed. I sobbed some more. (This was in a good way... so don't worry). I still have chills. Dear God, Martha even specifically mentioned illnesses like interstitial cystitis and fibromyalgia in that post! (Readers: see the link Tracee posted to Martha Beck's blog for the context on this).

Anyway, some people could misinterpret Martha Beck words... She talks about illnesses like fibro and IC that impacted her as being viewed as "incurable" (her quotes).

Let me be clear that in the context of this blog, it would be very irresponsible for me to call IC and fibro anything but incurable.

The Traditional Western Medicine model that developed these labels has NOT found a cure for these illnesses. I would never imply there is a cure for either because it could hurt patients who have them, make them feel invalidated, and lead to more societal stigma (i.e. "it's in your head", "it's just stress... so relax", etc).

These statements are NOT helpful to patients. A blame-the-victim mentality is NOT productive in any way.

That said, I understand what Martha was trying to say. I do not think Martha Beck intended to imply that these illnesses are curable (despite her use of quotes around "incurable").

In context (within her blog post itself and placing her entire blog post in the context of other things I have learned elsewhere), I do not think she meant her words the way some people, at a glance, might interpret them.

Let me speak for myself. After nearly 8 years of acupuncture from a wise, caring, compassionate practitioner... after much reading of enlightening materials that have opened my mind and led to a paradigm shift... and after viewing films such as "What the Bleep Do We Know?" (a movie with Marlee Matlin that mixes quantum physics, philosophy, science, etc.), "The Peaceful Warrior" (an incredible movie that basically is about the power of the mind), and another movie called "Indigo" (which I just KNOW you'd like Tracee), I have a different perspective now than I did a few years ago.

A friend mailed me some CDs of seminars called "Abraham Hicks". I will not lie to you. They took some time to grow on me. I stuck with listening to them because I have such high respect for the friend who went out of her way to ship them across the country to me.

I also was patient with them (despite them sounding a bit odd to me at first) because the core message about following the "emotional guidance system" resonated with me.

Also, Abraham Hicks, in my opinion, is (as the friend who sent it to me put it when we talked about the CDs later) a "purer" form of the "law of attraction" discussed in "The Secret".

Let me pause here to say that I don't want to offend any fans of "The Secret". There were some interesting points made in the movie. (I never did make it through the book. It just wasn't resonating with me the way Abraham Hicks did).

That doesn't mean that "The Secret" might not be fantastic for someone else. I can only speak for myself. For me, "The Secret" was too mass-marketed and too commercialized and it ended up being a "watered down version" of Abraham Hicks (as my friend worded it).

For someone else, it could be quite different.

Still others might think both "The Secret" and Abraham Hicks are just a bunch of "hocus pocus", cheesy, or "New Age garbage".

I can't worry what people think. I have to follow my gut.

My gut believes that, for me, Abraham Hicks is helpful. In fact, I haven't listened to the CDs in awhile and I really should do that.

For those who have some familiarity with the law of attraction as portrayed in "The Secret", one of the difficulties I had with that movie was the portion of the movie featuring a breast cancer patient who had a "spontaneous healing". I personally didn't care for the specific manner in which this was depicted.

I have done plenty of reading on mind/body healing over the years and there is ample scientific evidence that there is such a thing as "spontaneous healing" (in rare cases).

One of my doctors (who has both an MD and a PhD) and is open-minded about holistic medicine... and alternatives to strictly using Traditional Western Medicine ONLY).

He let me borrow a book that I had started flipping through in his waiting room. It was about mind/body healing and was extremely interesting to me.

This author (an MD) cited examples of some of those rare individuals who have achieved "spontaneous healing" via methods such as intense visualization, meditation, etc. [It has been a couple of years since I read this book but I think the book I'm recalling is "Quantum Healing: Exploring the Frontiers of Mind/Body Medicine" by Dr. Deepak Chopra. You may have seen him on Oprah].

Let me again be clear... I am not suggesting there is a cure for IC, fibro, or any illness. (If there were, I wouldn't be in such pain right now)!

However, I do comprehend that thoughts do matter. Thoughts are energy. In addition to the "What the Bleep Do We Know?" movie I mentioned earlier, my husband and I borrowed a library DVD called "The Elegant Universe". It had been a Nova special on PBS before going to DVD. It was about quantum physics.

I don't believe in using words like "cure" for illnesses that are deemed "incurable" in the medical community. If symptoms were to dissipate for any length of time for any of my illnesses, the term I might consider using is "remission". I would not use the term "cure".

For me personally, labeling someone as "cured" of an illness widely held as “incurable” just wouldn't be responsible, fair, or right.

That does not mean that I can't have a glimmer of hope. That does not mean that I must block out Martha Beck's words. (In fact, I’ll take a closer look at just exactly what she did say about this topic in a minute). Trust me when I say that Martha Beck is one voice in a large chorus that has been getting louder and louder to my ears for a long time now.

After exhaustive reading/research on my own, after picking the brains of many very well-respected specialists, after learning about quantum physics, and after observing how my own body handles stress, exposure to infections (i.e. a terrible immune system), timing and patterns of "flare-ups", and history of genetic illnesses in my own family... there is no doubt in my mind that these illnesses are all too real and I would be the very LAST LAST person to play "blame the victim" or in any way imply that any illness is a self-fulfilling prophecy, psychosomatic, etc.

If I suggested that, I'd be pretty foolish because of the sheer number of chronic illnesses I have that are considered by all leading authorities on them as incurable. I am not suggesting that.

What I mean to say is that Martha Beck's comments that are essentially about the futility of swimming against the tide and how trying to do so can make a person physically and mentally sick make sense to me. They make sense to me because I keep hearing them over and over and over again from a very diverse group of resources. More importantly, I can feel changes in my own body that seem, in my opinion, to be connected in some way to my thoughts. I have struggled for many years against labels like "disabled".

Unfortunately, our society far too often stigmatizes the disabled and severely compounds the challenges facing people with disabilities (for lack of a better word) or limitations of some kind.

There is no overnight means of recovering from the devastation of severe chronic illnesses. If there were...I'd be much more physically active and I'd be participating in activities that are OUT OF THE QUESTION for me at this time.

I do hold hope that my many illnesses will not continue on the highly destructive, painful, progressive path they have taken in the last many years of my life.

I know I will almost certainly not be "cured" of any of my illnesses because I know the research just isn't there yet for a major breakthrough that would provide a "cure".

Every day of my adult life has included pain. Some days the pain is tolerable but life-disrupting. Other days the pain is utterly intolerable, profoundly impacts my quality of life, and imposes SEVERE limitations on what I can do without causing further trauma and/or injury to my body. Some days fall in the middle there somewhere.

To get through the day, to keep hope, and to keep my thinking as positive as I possibly can in the wake of extraordinary adversity (my blog doesn't even touch the tip of the iceberg on the tales of adversity!), I MUST find a way to believe that things can improve from where they are at now!

Please notice that Martha Beck refers to her symptoms as "dormant". She does NOT state that her symptoms have been "cured". I think this is an important distinction.

I would not want anyone reading this to interpret anything I'm saying as implying that ANY particular illness is or isn't curable. That is NOT what I'm saying at all.

What I am trying to say in this very long-winded comment is that my personal "philosophy" (for lack of a better term) is that thoughts do matter, positive energy is a powerful force, and small changes (as simple as daily meditation for even a few minutes a day) can bring about a cumulative effect of some improvement of various symptoms of various illnesses in my personal opinion.

Without getting into a "religious" outlook on things in any way shape or form, let me say that I recently read a book called "Winning the Disability Challenge: A Practical Guide to Successful Living" by John F. Tholen (PhD)... and he talked about the notion that a chronic illness or disability can be a "blessing" in that the patient is forced to focus attention on what matters for finding their path and purpose (what you alluded to). (By the way, I don't have Dr. Tholen's book in front of me so I am paraphrasing/summarizing his "philosophy". See bottom of this comment for more info about Dr. Tholen's book).

The common thread of all the books, movies, seminars, your comments, Martha Beck's blog, the mind/body healing book I borrowed from my doctor's office, the numerous coping skills and lifestyle management changes my acupuncturist has suggested, and what my therapist has discussed with me is this... that living one's purpose, following one's path, and following one's intuition is of paramount importance. (I'm not quoting anyone here. The "common thread" statement I just made is my own words as a compilation of the words and thoughts of the people and resources I have been exposed to... that have shaped my beliefs).

I do believe living one's purpose can lessen pain. I will try to bypass the word "release" of pain (even though I know what you mean) because I would not want anyone to interpret my words as implying that I believe there's a "magic bullet" or "cure" for the many chronic illnesses that are poorly understood and very often genetic (at least in predisposition).

Tracee, as always, you have started a thought-provoking exchange. Your philosophical approach, your open-mindedness to things that are new/different to you, and your compassion for others are inspiring to me.

These qualities (and many others) are what "hooked" me on your blogs in the first place.

I'll put it right out there (because I know you can "take it")... I don't always agree with everything you say on your blogs. Sometimes you even manage to shock me with your provocative way of wording things.

Your courage to make your voice heard and speak the truth is what is giving me the strength right now to post this comment... easily the most controversial comment I have ever posted on my blog.

My intent with this comment is not to offend or upset anyone in any way, shape, or form.

At the same time, I recognize that the concepts we are covering may stir controversy, could be misinterpreted, and may cause some "discomfort" for those whose beliefs are not aligned with the mental paradigm that we are discussing.

If anyone has taught me that it's OK to "agree to disagree", it's you. Your blog dialogues (and that is what they are... dialogues) can get a bit heated at times because you push the envelope. You don't do so to upset anyone or to "stir up trouble". In my mind, you do so to get people thinking, to open people's minds to ideas that are new/different to them, and to have your own individual voice heard.

You are following your path/purpose. What can be better than that??

For information on the book mentioned above see:

http://www.amazon.com/Winning-Disability-Challenge-Practical-Successful/dp/088282290X/ref=sr_1_1?ie=UTF8&s=books&qid=1227890260&sr=1-1

There are some ways of wording things (just a slight number of them) in Dr. Tholen's book that didn't quite "resonate" with me. However, he made a very good case for the fact that a chronic illness or disability can open up a whole new world for a person and/or help him or her find that "purpose" or "path". This aspect of his book fascinated me the most.

Interestingly, after many years of practicing psychotherapy (counseling patients who had chronic illness/disability or a serious injury affecting his/her occupational status)... Dr. Tholen himself became disabled following an injury. If he had not gotten injured (the way he explained it in the book), he would most likely not have ever written the book. (He had long dreamed of being an author and his own disability led to that dream being realized).

By combining his clinical experience and personal experience, Dr. Tholen wrote an interesting book. As an aspiring writer, I found this "path" quite moving. (I have long wanted to write a book myself. I would need a good editor, huh??) :)

I'll close this comment with the www.amazon.com Product Description of Dr. Tholen's book:

"Losing the capacity to work can be a life-changing event, one that can challenge a person’s most basic notions about life itself. Each year, as a result of injury or illness, millions of American workers and an ever-growing number of Iraq war veterans are confronted with a profound sense of helplessness, insecurity, and self-doubt stemming from their inability to continue work. Winning the Disability Challenge charts a course of action to personal security and self-fulfillment and guides the disabled worker through both the emotional trauma of occupational disability and the complex world of disability rights and resources. It explores the frustrations of the newly disabled and explains disability benefits while offering 100 affirmations that provide comfort and help readers get back on track. This invaluable resource also includes a program of simple management methods for improving overall health, managing pain and insomnia, and coping with depressive and distressing symptoms."

Thank you, Tracee, for your comments and for the link you provided. Needless to say, it struck a chord with me. (I think this is my longest comment post ever). When I read the link you provided to Martha Beck's blog, I sobbed because her single blog post tied together SO many things I have learned from numerous and diverse sources...

To see it all tied together in one blog post just blew my mind... in a good way.

Jeanne :)

Tracee said...

I'm glad you liked the Martha Beck link.

It might be less protective of the world "incurable" to say that "just because they have yet to find the cure doesn't mean The Cure doesn't exist."

When you get right down to it they haven't even found the disease yet but YOU know it's there. I see no reason why patients can't discover both the disease and The Cure.

Evidently, the MDs say autism is "incurable" but that's not what Jenny McCarthy is saying. She's saying she has cured her son herself with vitamins, minerals, and diet and PRAYER and Belief and she isn't waiting around for a medical journal to validate that.

I have health so I'll leave this controversy to you. But, I see the pattern your talking about both in literature - some of the same you mentioned and some I just added to your Bookswim and my Netflix lineup - and in real people I know.

Hillary Rubin is not talking about treating symptoms of her "incurable diseases" in her Yoga DVD - she's talking about HEALING her body. She's making a clear distinction based on Law of Attraction theory.

If you are 100% a-symptomatic - do you still have a disease?

Jannie said...

I think "Generosity of Spirit" says what I think about YOU Jeanne.

Jeanne said...

Tracee,

I apologize for the delay in posting your comment and this reply. I was out of town this weekend.

Yes, I really liked the Martha Beck link and I appreciate you sharing it! :)

As always, you have gotten the wheels in my head turning. Upon reading your comment, I gave some serious thought to the term “cure”. We all hear lots of talk about “finding a cure” or “fighting for a cure” to various illnesses. It got me wondering if perhaps for some illnesses people would “not know a cure if they saw it”. This notion may sound strange to those who are not seriously ill. I think when one is healthy, it seems to be black and white... either someone is healthy or not. Either they are symptomatic or they are not. For example... if they were sick and are feeling better, does that mean they are “cured”? Does it mean they are in “remission”? Does it mean they are “healed”? Is the terminology used just a matter of semantics or is there more going on behind it?

I think the answer to that last question is that for some illnesses it is not just a matter of semantics. While some the symptoms of some illnesses can be vastly improved by lifestyle changes, others can be trickier. Obviously lifestyle changes such as diet and exercise can be powerful tools for healing. I know my acupuncturist stresses the importance of dietary changes, relaxation methods such as meditation, etc. I have felt the benefit of making lifestyle changes myself and I know they can really be helpful.

I think every illness is different. Some illnesses can be detected by a simple blood test or an x-ray. Other illnesses must be diagnosed by surgery. Still others are diagnosed primarily by symptoms.

We all know of multiple conditions that can be detected by a blood test. Examples would include infections, some types of cancer, diabetes, etc.

Endometriosis can only be diagnosed by surgery. There is no blood test, x-ray, or MRI that can definitively diagnose endometriosis or verify whether or not there has been a recurrence. (Patients in “remission” of endometriosis can be asymptomatic for extended periods of time only to have a recurrence of symptoms later. The definition of endometriosis is when a person has endometrial tissue located anywhere other than the lining of the uterus. The vast majority of women who have endometriosis do not get extended periods of complete relief of symptoms regardless of what treatments they get (medications, surgery, acupuncture, dietary changes, exercise, homeopathy, etc). They may have improvement of symptoms, of course. Some unfortunate people may try all of the above without obtaining much, if any relief of symptoms.

Any endo patient who has a stretch of being asymptomatic may have symptoms return at some later point. Even women who have gone through menopause (whether surgical menopause induced by hysterectomy or natural menopause) can continue to have various symptoms. Despite myths to the contrary, hysterectomy does not cure endo. In fact, many women continue to have problems post-hysterectomy --- because stopping periods does not stop any endometrial implants located on the bladder or ovaries or intestines (etc.) from causing symptoms.

If an ovary or both ovaries are left in, the natural estrogen continues to feed those implants. A woman who has a hysterectomy may or may not have an oophorectomy (ovary removal) performed. In the case of a woman who undergoes a hysterectomy with bilateral oophorectomy, doctors tend to push hard for her to take hormone replacement therapy (especially if she has a hysterectomy as a young age).

Unfortunately, the hormone replacement therapy (HRT) can feed any remaining endometrial implants/lesions that were missed at the time of the hysterectomy. Since endometrial implants can sometimes be remarkably small (i.e. microscopic), even the most skilled surgeon can miss endometrial implants during surgery. It is very common for endo patients to need numerous surgeries to remove endometrial tissue. Whether the implants were “missed” during a previous surgery or somehow were generated between surgeries is a controversial subject that doctors often disagree on. Since I’m not a surgeon and I obviously have zero training on removing endometrial lesions, I wouldn’t begin to engage on any conjecture about which theory is accurate or even if the same theory would apply to all endo patients. (Traditional Chinese Medicine views endo as SIX different illnesses). Also, many doctors believe that endometriosis is, at least in part, an immunological problem.

So endometriosis is an example of an illness where some fortunate individuals are able to obtain a “remission”. However, my experience has been that the vast majority of women do not experience prolonged remissions. Unfortunately, for many years hysterectomy was touted by doctors as a “cure” for endo. I personally know women who had hysterectomies years ago when many doctors were making such claims; these women have gone on to have serious, ongoing problems with endometriosis itself. Also, many of these same women have multiple illnesses correlated to endo. Often women have these other illnesses pop up after having a hysterectomy.

While there are far, far fewer doctors nowadays who buy into the theory that hysterectomies can “cure” endo, there are still some doctors out there who lead patients to believe that a hysterectomy is the answer to all of their problems. Unfortunately, I have met numerous women through my local support group who have had significant problems post-hyst -- when their surgeon had led them to believe their endo symptoms would stop with a hyst. Due to all of the past myths about hysterectomy curing endo, many women have endured continued suffering and serious regrets for having a hysterectomy. For some women, a hysterectomy can actually make them worse off than they were prior to having one.

I have heard the horrible stories of such instances and it is heartbreaking to hear them. This is especially true in the cases of women who sacrificed the ability to bear children based on the myth that hysterectomies would cure their endo. Women who have had hysterectomies to attempt to cure their endo (and who have given up their ability to bear children) who then go on to continue having endo symptoms post-hyst are understandably angry, hurt, sad, and frustrated.

In the case of an illness like fibromyalgia, the method for diagnosis is a combination of symptoms as described by the patient with the patient’s reaction to a trigger point test (generally a rheumatologist is the type of doctor who performs the trigger point test). Fibromyalgia patients have markedly different reactions when pressure is applied to trigger points as opposed to people who do not have fibro. If a fibro patient stopped having symptoms, there is no blood test to confirm that it’s “gone”. Since the cause of fibro is not understood, doctors wouldn’t even know what to check for to verify the fibro is “gone”, if such a test could ever be possible. Recently, a chiropractor in California who claimed he could cure patients of fibro had his license to practice revoked: http://theiciexperience.blogspot.com/search?q=whitcomb. This doctor was charging patients a great deal of money and the Attorney General got involved. When people prey on the sick to make money while peddling “cures” that cause people to fly in from out of state, pay for a hotel and expensive treatment, and end up losing their houses from their medical debt related to the fraudulent treatment labeled a "cure", the term can be a dangerous term that causes many people to bristle.

Back to Martha Beck. She never claimed there was a cure for anything. She is feeling better after having been diagnosed with illnesses like IC and fibro and that is awesome!! This gives hope to IC and fibro patients like myself that it is possible to attain an asymptomatic status. I thoroughly enjoyed Martha Beck’s link for various reasons. The hope her asymptomatic status provides other patients is a good thing. :)

I have seen Jenny McCarthy speak about autism on TV so I know the background for what you’re talking about with that. It is awesome that her son is asymptomatic from the measures Jenny has taken. Doctors are certainly capable of being wrong (!!) and it is entirely possible that there are illnesses such as autism that are considered by the medical establishment as “incurable” when that may or may not be the case. Doctors are human and capable of mistakes. There are many illnesses that used to be labeled “incurable” that are no longer classified this way by the medical establishment. So I totally understand your point with that. If my child had been diagnosed with autism and was now asymptomatic like Jenny’s son, I wouldn’t care what the medical journals said either. Goodness knows medical journals can be wrong. Just a look at the claims made for hormone replacement therapy for years and years... What the medical establishment now says after more research is an example of doctors switching their answers around.

What is Bookswim? You said you added something to my Bookswim? I’m not familiar with that.

Years ago, I read a book by Dr. Andrew Weil. He too talked about the body’s ability to heal itself in all sorts of circumstances. He too was not claiming he had “cures” for things. His emphasis was on healing. I think that is an important distinction.

Healing is certainly something that all can aspire to, regardless of what their condition is. There are patients who have been labeled “terminally ill” who have gone on to live a long and happy life... to the great surprise of their physicians. Doctors can be wrong and I believe that some patients are capable of spontaneous healing. I think the principle of the law of attraction is extremely interesting. I thoroughly enjoyed listening to the Abraham Hicks CDs my friend sent me. They helped me have a paradigm shift.

Many illnesses have a proven genetic component (able to be detected by genetic testing) or a suspected genetic component (no test available yet to confirm but very strong family history suggests it is caused by genetic factors at least in part).

Certainly there are some people who have a genetic predisposition to a particular illness who do not develop the illness while others with such a predisposition do go on to develop it. (I have blogged about this topic – epigenetics – in the past). There are measures that can be taken to reduce the chances of developing certain illnesses if one knows what to look for/do. There are certain environmental factors associated with endo, for example, that I take aggressive measures to control in an effort to prevent my daughter from developing endo when she gets older. (She has 2 grandmothers and a mother with endo. So I take every measure I know to avoid exposure to environmental toxins that could trigger any “endo genes” from being expressed for her). Obviously medical science can’t now tell me every single thing I would have to protect her from. However, I control the environmental factors I do know of in the hope that she will not develop endo.

My personal belief is that if a person has a strong family history of an illness believed to be genetic, that it may still be impossible to prevent the illness from expressing itself no matter how many environmental measures are taken. I can only hope and pray that the measures I am taking to prevent my daughter from develop endo will work. I also know the odds against her but obviously I try to focus on the positive and concentrate my energy on believing that she will remain endo-free. I do believe that thoughts matter and that thoughts are energy. I personally believe the quantum physics info we’ve discussed in the past (the “What the Bleep Do We Know?” movie, the “Elegant Universe” Nova special, Abraham Hicks, etc.) does matter. In regard to your mention of Jenny McCarthy using prayer, there are scientific studies that show prayer can help people heal. There have been “group prayer” efforts focusing on subjects like peace. There was an event called “Fire the Grid” on 7/17/07 that was interesting (http://www.firethegrid.com/). See site for details.

In regard to your question, “if you are 100% asymptomatic - do you still have a disease?”... I think it depends on multiple factors. One is whether the asymptomatic status lasts. Another is what the illness is. Another is the person’s lifestyle habits (what they eat, exercise, etc). I have seen people who eat a very stringent diet, exercise, take very good care of themselves, spend a fortune on food (whole foods, organic only, no hormones in meat, etc.) who are very positive in attitude, who practice the principles of the law of attraction and who are still very, very ill. Would they be sicker still without the measures they take? Almost certainly. I believe that in some cases genetics are such a strong factor that environmental changes alone may not be able to overtake genetics. Environmental measures may reduce symptoms or make “remissions” (for lack of a better term) possible.

I know of people who have been asymptomatic for endo, developed cancer, and more endo was found during the cancer surgery despite the fact that they were not having endo symptoms. Since the definition of endo is any endometrial tissue being found outside of the uterine lining, such a patient has endo. They may not have symptoms at that time but symptoms could crop up later. So in a case like that, the endo would be removed during the cancer surgery in an effort to prevent future endo symptoms.

Your comment got me thinking about how “cure” is defined. Here is what the American Heritage dictionary says about the word cure:

(1) restoration of health
(2) A method or course of treatment
(3) An agent, such as a drug, that restores health.

It is difficult to interpret that particular definition as applied to certain chronic illnesses...

Many illnesses that are widely labeled as “incurable” are in fact “cured” at some point by that definition... only to later recur.

So if they experience a “cure”, does that mean they are “cured” permanently? I never really thought of a cure as being temporary. I have always regarding a “cure” as the permanent absence of symptoms. In the case of endometriosis, presence of endometrial tissue outside the uterine lining is included in that category.

So it’s very tricky because if someone is “asymptomatic” for endo and then it happens to be found during surgery for cancer, they do have endometriosis (even if they didn’t feel the symptoms at that time). My paradigm has been that if you have ever had endometrial implants found outside the uterine lining, you have endo. In all of the research I have done over the years about endo, it has basically been drilled into my head that the past tense is not used for endo. In other words, an endo patient wouldn’t say, “I had endo”. The way I have been taught is that a patient who is currently asymptomatic would say, “I don’t have any endo symptoms at this time” or “I have been asymptomatic for x amount of time”. This makes sense to me in light of the extremely high odds of endo symptoms returning based on many people I know, what doctors say, what I’ve read, and my own personal experience. In the case of endo, I don’t think being 100% asymptomatic equates to saying “I no longer have endo” because I have had periods of time where my symptoms calmed down, only to be followed by terrible symptoms later (with no change on my part, to my knowledge, with diet, etc.) Many chronic illnesses have periods where the symptoms calm down followed by flare-ups which can be severe.

With endo, hormones are a huge factor. Hormones can be affected by something as basic as age. For example, a woman with endo could have a very different perimenopause than a woman without endo. So it’s tricky. Also, hormones fluctuate throughout a woman’s cycle. So there are various factors that impact whether a patient is asymptomatic at any given time. I don’t think it’s a black and white matter. I think there’s a LOT of gray. I think this is one of many reasons that endometriosis treatments are so inadequate and why so many women suffer greatly no matter how hard they try to handle the environmental/lifestyle end of things. Some factors are out of the patient’s control.

I think your comments bring up many interesting questions. I think there are different definitions/interpretations of what “cure” means. I think that people who are fortunate enough to be healthy are just that... fortunate.

That does NOT necessarily mean that they don’t work hard to attain health.

For example, I know that you take many measures to be healthy!

However, I also know of people who drink, smoke, and have a horrendous diet who are “healthy”... at least for now (i.e. the smoking may eventually cause lung cancer but they don’t have any breathing symptoms now).

So I don’t think that people can 100% control whether they are/aren’t healthy. If that were possible, I don’t think there would be so many people who are sick. Chronic illnesses in particular are tricky... The definition given for “chronic” is: “Of long duration; continuing or lingering”. As applied to illnesses, one doctor once told our local support group that doctors define a condition as “chronic” if it persists for 6 months or longer. Are there people who recover from chronic illnesses? Yes... I know people who fit this category. Is their recovery permanent? I don’t know if people can permanently recover from chronic illness or not. It seems possible to me that some people can but I just don’t know.

It’s interesting to think about what a cure is and what chronic means. One person’s definition or interpretation may be different than another’s. So your comment really brings up some interesting points and more questions. I don’t know if anyone can definitely answer the questions... but it’s interesting to ponder how to define things. Obviously in a case as striking as Jenny McCarthy’s son, the proof is in the pudding and she certainly isn’t going to care if the medical journals back up what she sees with her own eyes.

I just don’t think every situation is like that. It would be nice if it were but I think, unfortunately, many situations are much more complicated than that.

Thank you for your thought-provoking comments. It really does bring up some interesting points to consider...

I think patients absolutely can contribute valuable information to find cures. An organization that is doing very exciting work regarding medical research, CureTogether, seeks information from patients on its website (www.curetogether.com).

Their open source method of research encourages patients to participate in facilitating the furthering of medical research. Rather than a bunch of doctors and scientists mysteriously operating behind closed doors, organizations such as CureTogether try to pool information from a variety of sources to increase the amount of data available.

I really admire their passionate approach with the open source method and have blogged about their organization in the past. I believe their methods of research are more likely to be effective than other methods. Their process is more transparent and allows patients to assist by providing information about their symptoms. Their website allows patients to submit all of their diagnoses/symptoms (all confidentially). By pooling info from large numbers of patients, they are trying to better understand the connections between illnesses.

For example, their research aims to determine why one patient would have endo AND IC AND fibro. (Many patients fit into this category). I am excited about their research methods. I think CureTogether is a perfect name for them because they literally encourage people to work together as a team to find cures. For example... other researchers might be apt to focus on competitive things such as “who will get credit for the cure for XYZ?”, thus working in secretive ways. I think CureTogether’s approach is far better. With patients and researchers working TOGETHER, we may very well get a better understanding of various illnesses and get closer to better treatment options or even cures. :)

Jeanne

Jeanne said...

Jannie,

Ditto to you, my dear! :)

Jeanne

Anonymous said...

Hi I love The article: The Psychological Effects of IC.
I am not sure I am doing this corectly...

I am not sure when my actual diagnosis of IC was (around my hysterectomy 04/13/0 but for 5 years after the birth of my last child in 2001 I have been stigmatized by the Doctor who diagnosed my IC. This Doctor has made my life a living Hell. She insists my IC is brought on by hysteria, that it is somatic. I have lived with for so many years under her demeaning out look on my IC that I have\had begun to doubt my self. I have pictures of my IC with hunners(glomerations) ulcers but because this doctor has caused soo very much discord in my family i.e. with my husband who she also had (past tense) convinced that I caused my IC and that it is the result of stress… I did not know where to turn.
The first light of insight (what I believed all along, but was not allowed to believe) that IC was NOT something my mind created (because of this doctors influence)was when our insurance advocate gave me the number of a doctor to call in Ft. Lauderdale Florida, I live in North Dakota). This doctor said to me, "You cannot give yourself a disease, no matter how hard you try you just can’t give yourself IC." This was the beginning. After my middle child got hurt in a bicycle car accident (he has over 7 areas of trauma to his brain) in October of 2005 was when I went to a new family doctor and he told me that IC was not in my head. Since then, I still struggle with how the diagnosing doctor treated me…that IC was hysteria. As you can tell I am still not over that stigma, I feel like I have to justify my disease to anyone who will listen. I relate soo very much to your article and I thank you for writing it.
Since then I have met with and spoken to 4 other doctors who agree that IC is not created by stress, it is not of the mind. IC is a disease. In my case it is a disease that affects me such as your article states: “The messages from the bladder pain can make a patient feel upset, emotional and depressed as a result.” “IC is a daily responsibility. People without IC usually have the benefit of knowing that their stressful responsibilities have an end in sight.” The world with IC can become very small.”
Because of the first doctor I have cut myself off even further from the world. Her condescending ways and her TOTAL lack of understanding of IC and the fact that she was unwilling to even read the information about IC I brought to her office has hurt me and my family. She sent me to a shrink under the foreboding that I am a somatic person (that my pain is brought on by myself.) I have had to live with this for years. She felt ALL of my symptoms were in my head so much so that I couldn’t get the proper treatment for an inner ear infection or a cold. I would suffer tremendously before I would go in and see another doctor because of her somatic label she put on me. I would come to her with sinus problems and she would chart somatic pain. I since have had laser sinus surgery to clear up an over 40% blockage in my sinuses, and to help alleviate headaches do to a deviated septum. This doctor for over 4 years affected my life, my life with my family, and my ability to get proper medical care.
There should be some type of re-training for doctors when they are taught diseases like IC are hysteria. I feel for these doctors other patients who are still under her care. I know how miserable she made me feel, and I would like the further (abusive) treatment of misunderstood diseases by doctors who are unwilling to look out side their box put to a stop.
There is another woman who is related to me by marriage who has IC and she has also been lead to believe that IC is something that is caused by stress. I have tried to get the message out to her that IC is a disease. I can only conclude that she also has a doctor that has been giving her the WRONG information. I can see that this wrong information has hurt her in her ability to cope with IC.
Thank You,
C

Jeanne said...

C,

I am so sorry for everything you have been through!

If by saying "I don't know if I am doing this correctly", you meant that you weren't sure if your comment was posting properly... you did it perfectly! (I'm not sure if that's what you meant or not)?

I know that commenting on blogs varies from one blog to another. (For example, most Blogger/BlogSpot blogs - like this one - are commented on differently than, say, a Wordpress blog.

Anyway, your comment has posted as you can see. (At least I hope you can see it... I don't know if you have a blog and I don't have your email address because your comment went through as anonymous).

So, if you selected the option to receive follow-up comments to this post, you're seeing this now.

If not, you may never see this. :(

I am hoping that you either checked the option to see follow-up comments to this post... or that you will re-visit my blog sometime soon so that you'll be able to read this!

If you make any future comments, you can insert "C" as your name if you prefer that to "anonymous". Anonymous is fine too. I just wanted to let you know in case you weren't aware of this option.

In any event, I got to see your comment... So it doesn't matter if the "C" only shows up when you sign or if it also shows up in the name field... or not.

If you don't have a blog but do want to list "C" as your name, you can. Here is a link with tips on posting comments that I wrote back when I first started blogging:

http://endendoat.blogspot.com/2008/07/tips-for-endometriosis-blog-readers.html

Blogger/BlogSpot blogs have that tiny little font for comments at the end of each post. I wish it were bigger and easier to see for those who are not accustomed to commenting on blogs.

I'm glad you got this to post! :)

Your have some thought-provoking comments that so many people can appreciate. TOO MANY people have been through the types of sad, frustrating circumstances you described. :(

My own diagnosis took 12 years and 4 cystoscopies.

The 1st two cystoscopies were performed by the same urologist each time. Both were supposedly "negative".

A different urologist did my 3rd cystoscopy. He also said I did NOT have IC.

Then I saw a 3rd urologist! (I always forget about him because he didn't do a cystoscopy).

Anyway, he (the third urologist) didn't give me the classic prescriptions that are used to treat "overactive bladder" as my 1st urologist did. (I had NO success with those)!!

The 3rd urologist gave me some prescriptions that were used "off-label".

In other words, the prescriptions were FDA approved for something --but it wasn't overactive bladder and it wasn't IC.

I remember he mentioned something about thinking my hormones were somehow malfunctioning. He had some theory and showed me a diagram about what he thought was causing my symptoms and sent me on my way with 2-3 different prescriptions that he thought would help me.

The prescriptions he gave me were not hormones (I would remember what they were if they were hormones)... but somehow he thought that they were going to help my bladder symptoms.

They actually worsened my IC symptoms.

Anyway, I had my 4th cystoscopy done by a pelvic pain specialist. That was when... 12 years after my sudden, dramatic, severe onset of symptoms in 1992... I FINALLY got the correct diagnosis: IC.

My pelvic pain specialist (who I still see) did a cystoscopy while I was under a general anesthesia for a laparoscopic surgery (for endometriosis).

When I came out of recovery, my husband said that my doctor had said emphatically, "she DEFINITELY has IC"!

I remember being relieved! That may sound strange to some. Why would I be relieved to get a diagnosis for a painful, chronic condition, right? I was relieved because FINALLY I had a doc who believed me! Finally, I was in competent hands! Finally, I had a doctor who might actually be able to HELP me!

After 12 years of misdiagnosis and/or doctors simply thinking I was imagining it or that I was just "stressed"... I finally had a doctor who "got it"!!

Any illness can be worsened by stress, of course. However, that does NOT (!!!) mean that patients symptoms should ever be just plain "chalked up to stress", that patients should feel like they are not believed, or that patients should be treated as if they are "crazy" or "imagining their symptoms"!!

I will have to read the article you mentioned!

I did take a very quick peek at it but I didn't have time to read it right now and I wanted to focus on getting your comment posted! (I have been trying to get to this response ever since I saw your comment... I knew I'd need some time to respond when I read what you have been through)...

So knowing that I needed time to type up this reply delayed me a bit for me getting your comment posted than I would have liked! Sorry for the delay!

So I will need to look at that article later.

I am just so, so sorry for everything you have been through!

It is inexcusable that doctors cast aside patients symptoms of IC with terms like "crazy", "neurotic", "psycho-somatic", etc.

It is a crying shame that your doctor disbelieved you AND turned your own husband against you!! :(

I'm so sorry you had to go through that!

It's hard enough for our loved ones to understand our chronic illnesses when we DO have the right diagnosis and we DO have a competent doctor.

When doctors dismiss patients' symptoms, refuse to validate their concerns, etc... it is very sad!

I am glad you finally found a doctor who was able to give you the correct diagnosis!

The entire 12 years they kept checking me for IC with cystoscopy after cystoscopy, I just KNEW I had it. I had all of the classic symptoms. I ahve endometriosis (which often co-exists with IC). I did not respond to treatments for overactive bladder.

I knew I must have IC. Yet cystoscopies 1, 2, and 3 all came up negative... by different urologists! I still was convinced I had it. I just had to find a doctor who believed me and who had a clue about properly diagnosing & treating IC!!

Anyway, when I had my very first pelvic exam with my current pelvic pain specialist, he commented that he thought I might have IC. Simply observing the winces of pain and the grimaces I was making when he dared palpated anywhere near my bladder got him wondering. (Plus he knew I had multiple conditions that often overlap with IC).

So, when he did my laparoscopy, he did a cystoscopy the same day. Finally the correct diagnosis!!

I'm so sorry about the suffering you've had since 2001.

The stigma and misunderstanding associated with "invisible chronic illnesses" (like IC) are tremendous. :(

Doctors are supposed to go by "first do no harm". Well, it sounds like your doctor harmed you and your family!

What is interesting about the word "hysteria" is the root word of it... Women tend to be minimized or have their symptoms somehow invalidated with terms like "hysteria"...

A "HYSTERectomy" is defined as the surgical removal of the uterus. (Source for this wording is American Heritage Dictionary).

The definition of "HYSTERIA" (same dictionary) is:

1) A neurosis marked by a physical ailment with no organic cause, such as sleepwalking or amnesia.

2) Excessive or uncontrollable emotion, such as fear or panic.

Hmm. So when these words were coined, were the people who came up with "hysteria" as meaning someone with a psychosomatic condition the same ones who decided to call surgery to remove the uterus a "hysterectomy".

Both words are derived from Greek, according to my dictionary.

In a nutshell, my belief is that for many years there has been pervasive sexism that made it "OK" to blame "female problems" on neuroticism or "being crazy". Thus that pesky root word business.

Since the vast majority (not all) of patients with IC to this date are female, IC is one of those illnesses that too often gets written off as simply "stress", "craziness", etc.

Illnesses like IC, endometriosis, finbromyalgia, etc. tend to get blown off by many doctors who either don't believe in them, don't know how to diagnose the, don't know how to treat them, have not received proper training on them, etc.

It's far easier to just "blame the victim" than to have to figure out what is going on OR simply refer to patient to another doctor (perhaps a specialist accustomed to treating lots of IC patients or fibro patients or endo patients)!

Some doctors' egos just cannot accept the notion that MAYBE they need to make such a referral! It's so sad!

The demeaning outlook of your former doctor is all-too-common.

I have met many IC patients (locally, in person via endo support group meetings). I have "met" many more IC patients online... such as yourself.

I don't think I have ever met a single one that got diagnosed by Dr #1 or test #1! They all seem to have gone through hell like you did or hell like I did. :(

This is just plain wrong!

It is perfectly understandable that you would beging to doubt yourself when this woman insisted year after year that there was nothing physically wrong.

Making a patient doubt him or herself when they are spot-on is just wrong. :(

The pics you mentioned remind me of the pics I got from my 2nd laparoscopy. Endo surgeon number one swore he had "cleaned me out". I kept having SEVERE symptoms right from just after surgery even though he had just "cleaned out" my endo. He was stumped.

So stumped that he sent me to the hospital to be checked for all kinds of wild things like toxic shock syndromw and early menopause. (I was 24 at the time). The reason he wanted my hormones checked re" early menopause was my TERRIBLE hot flashes. (It turns out that the birth control pills he put me on right after my 1st lap - a different brand than ever before - were GIVING? me the flashes!)

So when I had lap #2 10 months after lap #1 (with a competent doctor), I was given the pictures of my endometriosis! It was so validating to see those pictures and know that Doctor #1 was way off-base and that I DID have endo symptoms right after surgery... despite what he said.

(The BCPs he had me on should never have been given to me).

Years later, another doc told me that class of BCPs would be expected to WORSEN endo symptoms (as it did).

Also, I worked as a pharmacy tecnician after the switch from Dr. #1 to Dr. #2 and the pharmacists I worked with agreed that the BCP I had been put on by the first doc were a BAD match for me!

It sounds like even the pictures didn't convince all concerned that you really had IC, a real medical condition... This doctor came between you and your husband... That's just wrong.

I'm glad your husband understands that this doc was incompetent about the whole thing. It's just so sad that you ever had to live under that cloud of doubt.

No one can "cause their own IC". The very notion shows how incompetent this doc was. Actually, I think "negligent" would be a better word!

This makes me sad... especially because I have heard So many of these horror stories over the years! It's maddening!

Thank heavens that insurance advocate gave you the number of the Ft. Lauderdale doctor.

Hearing this doc say, "you cannot give yourself a disease"... and "no matter how hard you try you just can’t give yourself IC"... had to be liberating and validating for you after all of that suffering and the self-doubt Doctor #1 had instilled in you!

You are right! IC was NOT something my mind created.

So you traveled all the way from N. Dakota to Florida just to find a doctor who would believe you? I am so sorry! (Sheesh.. I hope maybe yo at least got a little Florida sun out of it)!

I am so sorry about the accident your child got hurt in!!! :(

Is he/she OK now? Brain trauma sounds like pretty heavy stuff. You have been through hell, huh?

I hope your child is OK!

I'm glad you found a new family doctor who also told me that IC was not in my head!! Finally some competent doctors who don't play "blame the patient"!

I can certainly see how/why you would struggle with how Dr #1 treated (I mean... MISTREATED) you.

I have been through some bad, bad, bad experiences with various doctors and hospitals over the years. (These included near-death experiences at the hands of doctors who cared more about making a buck than treating my conditions)!

After years of therapy, I try hard not to look back and dwell on the past. I am not suggesting you don't have a right to your feelings. Feeling it is better than stuffing it. Stuffing emotions just creates MORE illness. :(

The thing is that you could drive yourself mad re-living what that horrible doctor did/said... or you can try to focus on moving forward on your path towards wellness. I'm not trying to play armchair psychologist here. (Really, I'm not).

I have to say that with everything I have been through, I *TOTALLY* get your bitterness towards #1 who put you and your family through hell. Who wouldn't be upset about that?

Now you know she was dead-wrong. IC is NOT "hysteria". It is REAL.

Of course it takes time to get over such a terrible situation. (You're talking to someone who was diagnosed with PTSD after a 10-day hospitalization that CREATED the trauma that was diagnosed as post-traumatic-stress-disorder). I totally "get it".

All chronically ill patients (especially the "invisibly ill" ones with conditions people can't see) feel this whole, "I have to justify myself" pressure. Try not to let that drive you mad.

I have learned that I MUST stop worrying what others think, do what's right for me and my family, and resist the urge to "explain myself" all the time. I think when I over-explain, it makes me look defensive & that makes people even less understanding!!

I'm glad you liked the article. :) There is no need to thank me.

I have come to believe that at this point in my life, my purpose (outside of precious time with family and friends) is to write this blog.

I just want to help people.

The wording trick with stress, I have found, is this. Many docs believe that ALL illnesses are caused, at least in part, by stress. For example, I could be pre-disposed to cancer (had some removed in 1996) but stress could cause the genes to express themselves. (I have blogged about this topic - epigenetics).

Anyway, the 4 other doctors are certainly right that you didn't cook up your IC with your mind like that awful doctor tried to tell you and your family was the case!

At the same time, I think all illnesses have a "stress component" of some kind (some more, some less).

I believe in mind/body medicine. That does NOT mean I think you wished IC on yourself anymore tyhan I wished my many illnesses on myself!

What I mean is that Eastern medicine is more holistic (whole-body) and Western medicine is more apt to separate things in a very black & white way (either a condition is 100% physical or 100% mental). I believe that meditation, for example has helped some of my symptoms.

By calming my mind and focusing on the present moment during meditation, I can get some kind of relaxation that is healthy!

If I stew over the past or worry myself sick about the future, I get SICKER! So I try hard not to do either.

IC is a disease!

I'm glad my article resonated with you.

Depression commonly exists with just about any chronic illness. Studies have shown this time and again.

The isolation you described as "cutting yourself off from the world" is very common. It may have been a symptom of depression brought on by IC and the first doctor!

I've learned over the years to fire the condescending docs and seek treatment elsewhere. Why reward bad behavior is my thought.

She sounds like she was just clueless about iC but she also sounds pretty arrogant for not being willing to LOOK at the info you brought in. (Been there, done that. Many docs hate to feel like the patient is tryingb to "tell them what to do". It's an ego thing with many docs).

She can't hurt you or your family anymore unless you let her by focusing energy on what happened with her in the past. I say this NOT to be mean but because it's what works for me... moving forward rather than looking back.

I have had docs ignore simple things like ear infections b/c they thought I was "psycho-somatic" or "crazy". I totally get it. It's hard to shed those labels. Sounds like she poisoned other docs against you too. Nice. Real nice. (Been there, done that too)...

Try not to let this horrible doc steal ANY more of your energy away!! Save it for yourself & your family. :)

Yes, more training and "re-training" is very necessary.

Endo patients have battled this for decades and decades...

I feel for the patients still with that awful doc too... but you need to take care of yourself now! As my husband would say, "you can't save the world".

Clearly you are very caring and compassionate and such concern is just in your nature. Sadly, it is out of your control who the other patients see. So just focus on YOU!

I am very much like you about trying to prevent these things from happening to others. I have reported doctors before. I understand you feel compelled to "do something".

The thing is that (as my hubby puts it), you can't "save the world". So try to focus on you and your family for right now. :)

Your body will thank you for it. (You only get one body)! :)

I wrote a letter to endo doc #1 telling him about the endo found 10 months after he "cleaned me out". No response. A few years later, an endo support grp member in same city told about her jerky doctor... Sure enough, it was him.

You are not going to change her.

Help your relative to get educated and advocate for herself. Make sure she switches from her own "bad doc" to someone who can help her. (You can "teach her the ropes" now)!! :)

You can't make her change her mindset. You can tell her your story (if she is open ti listening) and then it's her job to take action. You can lead a horse to water but you can't make it drink.

Trust me, if she gets sick enough for long enough and she has one of these "bad docs", she may eventually come around. In the meantime, give her some space if she gets defensive about it. She may be in denial that she may have an incurable, chronic illness. So inform her when you can but cut her some slack too. :)

THANK YOU so much for your packed, detailed, heartfelt comment. I hope and pray you will see this reply and come back for more visits here: :)

Your comment was amazing and you can offer so much info and hope to others!!! So I truly hope you do see this and come back.

Jeanne :)

Jeanne said...

C,

Please excuse the typos in my reply from last night! I was very tired when I was typing it!

:)

I hope you will see the updates to this post!

Jeanne

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