Helping women with chronic illnesses
ChronicHealing.com

Category — Raynaud’s

Who Knew One Abscessed Tooth Could Cause So Much Grief?

As I mentioned previously, I have an abscessed tooth that needs to be extracted. A root canal was attempted on this tooth awhile back but due to the unusual nature of the tooth, it was not possible to do a successful root canal on it. (The instruments were bending and it simply wasn’t possible to go any further). Two endodontists later, I have been referred to an oral surgeon to have it extracted.


The green number 29 above refers to the tooth number affected. The green arrows and number 2 below indicate that this tooth has two roots despite the fact that it is not a molar. (It should only have one root). The yellow arrow points to the tooth behind that one. It is marked with a crown symbol because it has a crown on it. The red arrow points to the abscessed area beneath tooth number 29. The blue arrow points at the tooth in front of tooth number 29. Last but not least, the purple arrow above all three teeth indicates where a bridge will go (over the three teeth). I’ve been told that it may take months for the area to heal sufficiently following the extraction before the bridge can be installed. (The crown will come off and the bridge will sit where it is now).

Having had two previous extractions where anesthesia failed (and I felt everything!), I have been very nervous about having another extraction. On top of that, out of the four colonoscopies I’ve had, for two of them the IV sedation failed and I felt everything. (For the other two colonoscopies, the pain wasn’t as bad but I never got sleepy – the way the hospital staff kept telling me I would/should).

To make a long story short, my dentist sent a letter to the oral surgeon explaining why he believed general anesthesia would be appropriate in my case. Thankfully, the oral surgeon “gets it”. Since he is the chief of the oral surgery department and since his office suite is located right in the hospital building, it will not be necessary to use an operating room. (He has everything he needs right in his office and he can administer the anesthesia). This will cost far less money than having general anesthesia in the operating room. It will be done as an outpatient. The figures I was given by phone were far higher than reality. He apologized when he learned of the figures his staff had given me and told me that I had been “misinformed”. What a relief that it is far less money than I was told initially and that he’ll be using a general anesthesia medication.

In the meantime, I recently had a migraine for 8 consecutive days. I don’t think the abscessed tooth helped matters any. (My primary care physician was telling me last week about how my dental issues could affect the migraine pain).

Now that my migraine is gone, my blood pressure has stabilized. It had gotten quite high during the migraine. My primary care physician instructed me how to tweak the dose of my blood pressure medication (something I need to do based on where I am at in my cycle). Right now, I’m on the usual dose. I don’t want to double the dose unless I really need to. Plus, altering the dose may affect my Reynaud’s.

In any event… between the migraine for over a week, the abscessed tooth, the appointment that got squeezed in because my PCP wanted to talk (in person) about the blood pressure spiking up and down, and other medical appointments, I have been feeling drained and overwhelmed. I will be happy to get this extraction behind me (scheduled for early October).

To say that I am behind on replying to emails, blog comments, and Facebook messages would be an understatement. I can count on one hand the number of blog comments I have submitted in the past month or so. I appreciate everyone’s patience. What I’ve described in this post is really just the tip of the iceberg, I’m afraid. I really dislike getting backlogged on messages. While I know that other people who have chronic illness(es) understand, it still overwhelms me when things get as backed up as they are now. Thank you all for your understanding.


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


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September 24, 2011   6 Comments

Teenagers: Living With Undiagnosed Endometriosis

For 29 years, I have lived with endometriosis. Nineteen years ago this month, I was diagnosed with endometriosis via an outpatient surgery called laparoscopy. (By the way, this type of outpatient surgery is the definitive method for diagnosing endometriosis).


In the first ten years that I lived with endometriosis, I knew something must be wrong but I didn’t have a name for it. It wasn’t until March 1992, at the age of 23, that I was properly diagnosed with endometriosis.

Looking back, I am truly amazed at what I experienced in those first 10 years. That picture of the woman on the floor above triggered memories for me of how much time I spent lying on the floor in years past. Lying on the floor of the bathroom was a common thing for me because nausea and vomiting were a major problem for me in the early years.

I have written about endometriosis in regard to teenagers HERE and HERE. As you can see from the outpouring of comments on these posts, women who have lived through teen years with endometriosis symptoms are passionate about supporting girls who are currently going through similar experiences. They are eager to help these girls because they remember all too well what it felt like to live with endometriosis as a preteen or as a teenager.

I’ve also written previously about some of my own personal (least favorite) memories of being a teenager living with endometriosis.

Also, I was interviewed during Endometriosis Awareness Month in 2009 by Amy Jussel of Shaping Youth for the purpose of helping preteens/teens and their parents know what to look for, when to suspect endometriosis, and what to do about it:


I am passionate about the topic of endometriosis awareness. I am particularly interested in the well-being of preteens and teenagers who are living with undiagnosed endometriosis because I remember what it felt like as if it were yesterday.

Blacking out from the pain caused by endometriosis, vomiting with periods, excruciating abdominal pain that affected my quality of life in profound ways, severe hemorrhaging, frightening blood clots, intestinal pain, bladder pain, and so much more were my “normal” for many years.


When I was in high school, there were many times that I forced myself to go to school but was then physically unable to make it through the day. I was a straight A student and I WANTED to be in class. Nevertheless, any time I would reluctantly drag myself to the nurse’s office because my body refused to cooperate with my strong desire to be in class, the nurse always treated me as if I were some slacker who simply wanted an excuse to skip class. Nothing could have been further from the truth.


Once the nurse gave up on me being able to go back to class and she let me call for a ride, I would wait out by the front door of my high school. There were two stairways… one on either side of the short hallway that led out to the front vestibule area. There was a heater vent there. My high school didn’t look as dingy as that picture above. However, that heater vent reminded me of how I would sit on the floor, curled up and bent over in front of the vent as I waited for my ride.

It seems like the worst of these times in high school happened during senior year because many of the times I waited for a ride, my friend Nancy was there, by my side… keeping me company, cheering me up, and waiting for our ride. (There was some sort of rule senior year that you could schedule your study hall for last period and be able to leave before regular dismissal time. Somehow we managed to leave early without getting in trouble thanks to that awesome rule). I honestly don’t know what I would have done in my teenage years without Nancy’s support. She was always there for me and I will be eternally grateful for her support during one of the most challenging times in my life.

Eleven years after we graduated from high school, it was Nancy who stood by me as my maid of honor.

Nancy_Jeanne_Wedding
My Wedding Day, 1998


In any event, I really don’t want to get too dark and dreary talking about how difficult is was to be a teenager living with undiagnosed endometriosis. Quite the contrary. I decided to write this post in the hope that, like the other posts I have written about teens living with suspected endometriosis, teens and/or their parents who are searching the Internet for information might find this post and hear this message:

IT GETS BETTER.


Without providing an elaborate list of the many steps I have taken between my teens years and now to cope with endometriosis and manage my symptoms, I’ll just say (in a short, simplified list) that after having multiple surgeries; trying various medications; investigating alternative medicine; finding that certain things (i.e. acupuncture!!!) have helped me greatly; and finding doctors who are knowledgeable, highly skilled, trustworthy, compassionate, and ethical… my endometriosis is much better-controlled now than it was years ago.


There is no cure for endometriosis. However, there is hope. There are a great number of treatment options (some of which are generally not mentioned by Traditional Western medical doctors) available. It takes time and persistence to learn about everything that is available (and there is a minefield I will generically label “scammers” to watch out for) but it IS possible to get pain relief or reduction and more.

One caution: To elaborate on what I mentioned above, there are many scammers who prey on endometriosis patients. There are doctors who call themselves “endometriosis specialists” but who I would not want treating me! It is absolutely imperative to find the doctor who is right for you. This process can be challenging and confusing. Just bear in mind that some doctors are very hyped up as being “experts” but that doesn’t necessarily mean anything. There are doctors who are great at self-promotion but that doesn’t necessarily mean that they can deliver on their promises.


Living with endometriosis is challenging. Getting diagnosed in the first place is typically challenging too. When you’re dealing with an illness where 10 years from onset of symptoms to diagnosis is the average, there is obviously much room for improvement in getting people diagnosed earlier.

No matter how challenging endometriosis can be (to get diagnosed in the first place or to live with it once diagnosed), things can get better. There are options available for managing symptoms. They may be difficult to find. What works for one patient may not work for another. Researching and making sure that options are safe and effective (as opposed to marketing scams and such) is very important. Mutual support between fellow patients is crucial and incredibly helpful.

My point is not to have a fairy tale ending here. There is no cure for endometriosis. In that sense, there is no fairy tale ending. However, things can get better. It is important to have hope. I am 42 years old. I have lived with endometriosis since I was 13 years old. That’s a large proportion of my life! I remember what it felt like (in my teens and most of my 20s) to lose hope, to be very scared, to be afraid I would never get pain relief, etc. I don’t feel that way anymore.

I have a sense of peace now that I didn’t have in my younger years.


Are things always peaceful? No way! Just ask any of my friends or loved ones. I can vent with the best of them. However, when I compare my outlook now with where I was at in my teens and 20s, it’s like night and day.

Despite the fact that I have been diagnosed with a large number of chronic conditions since my endometriosis was diagnosed in 1992 (many of which are co-existing conditions to endometriosis), I don’t feel the sense of desperation and hopelessness that I used to feel. Years of mutual support, support groups, meeting people online who “get it”, learning from other patients about things I never would have learned about from my doctors, doing my own research/reading, advocating for myself, and working with other patients to try to increase awareness of this serious illness have left me feeling empowered.

Please sign the endometriosis awareness petition. The comments left on it in the optional comment field by some of the signers bring me to tears. The more people work together, the better off endometriosis patients will be. By the way, thank you to everyone who has been sharing the petition link on Facebook and Twitter and those who have Facebook ‘liked’ the petition page. The number of people signing the petition has really picked up recently. Let’s keep it up!

An estimated 89 MILLION women & girls worldwide (conservative estimate) have endometriosis!

“This makes endometriosis more common than AIDS & more common than cancer”



Here’s a shorter link for sharing it on Facebook & Twitter:


GoPetition



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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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March 7, 2011   55 Comments

Frozen Fibromyalgia

No, I don’t live in Antarctica… like my friend here. It just feels that way at the moment!



When I wrote my last post, Down the Drain, I was hoping to be feeling a bit better by now. Realistically, I know that I won’t get significant relief from my fibromyalgia and Reynaud’s Disease flare-ups until spring. I know this because of how the last 8 winters have gone. As much as I’d like to believe that I will magically feel some significant relief of my fibromyalgia and Reynaud’s symptoms soon, I know the likelihood isn’t great.

On a brighter note, at least my Reynaud’s is not quite as severe this year as last winter… at least not so far. I am on a lower dose of my medication for hypertension than last winter. The cardiologist lowered my dose during my dysautonomia workup (I had a tilt table test last April) because my blood pressure actually got too low and that was triggering syncope (fainting) and near-syncope. (My heat intolerance in the summertime was a big factor with the dysautonomia too). As it turns out, the hypertension medication exacerbates Reynaud’s symptoms.

That makes fibromyalgia my biggest challenge at the moment (plus or minus a multiple chemical sensitivity exposure here or there but who’s counting?) At least, it’s arguably my biggest challenge until my next migraine hits. That could happen any day now. The scary thing is that the weather is not expected to magically warm up in the meantime. So, I am bracing for migraine pain on top of the fibromyalgia pain.

In a moment of irony, I should mention that one of the options that my primary care physician mentioned might help my migraines is to… wait for it… increase my dosage on the hypertension medication to where it was before. I am hoping that will not be necessary.

I was so, so cold and in so, so much pain this morning (plus I was barely keeping my eyes open), that I had to go back to bed. I’m a million times more awake now (11:49 pm). This is not helpful since my insomnia has been going on for months now. The fibromyalgia pain is intense. So, this is why I have been writing less frequently than usual. I’m really struggling lately. When I walked outside this morning into 7 degrees Fahrenheit, I knew that I was in trouble. Even being outside very briefly can result in a process of many hours to “thaw out” once I’m back indoors.

Slowing my pace down lately has not been an optional thing. My body is giving the orders. I’m following and there is no forcing things if I wanted to (which I don’t because I have learned that this results in paybacks later).


I am very much looking forward to acupuncture on Saturday!!!

Thank you for your patience.


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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January 14, 2011   7 Comments

Down The Drain…

While I generally strive to focus my energy on things like gratitude, positive energy, and moving forward… there are times when I fill like my energy has just gone down the drain.


My blog post titles are generally a bit cheerier than today’s but the fact is that I am exhausted right now. Some days are like that. For several days now, I have wanted to write a blog post. However, I haven’t been able to summon up the energy until now.

Yesterday, I spent most of the day in bed. After having woken up with a migraine, I went back to bed shortly after I got up. My body was telling me in no uncertain terms to rest. So, I listened to my body.

This time of year saps my energy because the cold weather exacerbates my fibromyalgia. So, that is a factor in my drained energy too.

The altered schedule and additional responsibilities associated with the holidays are certainly a factor in how drained I am also.

How about you? Do you feel drained? Is your energy level lower than you would like it to be?



When your energy is drained, how do you rejuvenate?

Do you get extra sleep?


Do you listen to music? (Regular readers here know that the music that helps me the most when I need healing is that of Tori Amos). Whatever type of music you like, is it as powerful for you as it is for me?


Do you take a hot bath?


What do you do when you are feeling drained? What lifts your energy? Are you like me where a hot bath can help or make matters worse depending on just how low your energy level is? Are there times where you feel too dizzy or exhausted to take a hot bath? Are there other times where a hot bath makes you feel much better?

Other than getting additional rest, listening to music, and taking a hot bath… what activities are helpful to you? I would love to hear your feedback. What works for one person may not work best for another. However, I think it can be helpful to share coping strategies. Please share some of your coping skills.

What is in your bag of tricks?


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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January 5, 2011   18 Comments

Have A Happy, Healthier New Year And Thanks!

As 2010 draws to a close, I would like to thank everyone who took the time out of their busy lives to support Chronic Healing (here, by ‘liking’ the relatively new Facebook page, by “following” Chronic Healing on Facebook’s NetworkedBlogs, etc.)


From talking with many fellow chronic illness patients throughout the year, I know that some of you have suffered losses, setbacks, and escalation of symptoms. Some of you have suffered stress associated with physical pain, the financial burdens associated with chronic illness, and/or the emotional toll that illness or life circumstances have exacted.

Others have experienced progress in dealing with symptoms, in learning about previously unknown/poorly understood treatment options (i.e alternative medicine options that typical MDs don’t exactly dole out referrals to, generally speaking), or simply have learned better ways of managing the illness(es) in question.


Some of you have a complex combination of the above (i.e. 1 step forward and 2 steps back).

Some of you are fortunate to have a remission of symptoms but want to stay in the loop about the chronic illness(es) you have because you are fully aware that the illness(es) are incurable and you want to stay informed and linked to fellow patients.

Others of you aren’t chronically ill at all. Perhaps you are supporting a chronically ill loved one or friend by learning more about his/her condition. Or perhaps you are trying to learn more about chronic conditions for other reasons altogether!

Whatever it is that brings you to Chronic Healing, please know that your support is appreciated very much!!


Whatever category (or cross-section of categories) applies to you, I hope that you find Chronic Healing a safe place to turn to when you feel the need for support, information, and connection with others from the chronic illness community.

Sometimes the validation of knowing that there are others (many others!) who share the same chronic illnesses is helpful. The validation can provide major relief for patients who need to feel like someone “gets it”.

The degree of caring and compassion in the online chronic illness community is strong, powerful, and incredibly helpful to so many!


For those of you who have discovered Chronic Healing recently through the relatively new Facebook page, please be aware that there are over 400 posts on this blog itself. It may well be that there is a post (or many) that you can relate to. So, don’t be shy taking a peek through this blog. Some of those older posts might be helpful to you now even if it’s been awhile since they were written.


I cannot thank everyone enough for the blog comments, support, feedback, link-sharing, etc. It is a joy to interact with so many caring, kind, thoughtful individuals (ill or healthy!) in the course of my journey writing Chronic Healing and interacting with people on many other sites besides my blog, such as Facebook, as well.

The amount that I have learned from fellow patients since I started blogging in 2008 is mind-boggling. The 16 years I spent attending endometriosis support group meetings every month prior to starting my blog laid a foundation for me to be able to learn how to help connect patients with each other (once it had first been so wonderfully modeled for me, of course)! I am inspired every single day by fellow patients, activists (health or not), and all sorts of people who focus their PASSION on helping others and, basically, making the world a better place to live in!


I have laughed and cried with many of you. Some of you, I am just getting to know. All of you are appreciated! When I started my blog in 2008, I was nervous and unsure of what to expect. Obviously, I was excited too. However, there was plenty of uncertainty starting out… and starting a blog was something I thought about for a few months before diving in.

Now, 2.5 years later… I have a hard time remembering what life was like before I started writing my blog. It truly has been a life-altering experience.

I wish a HAPPY and HEALTHIER New Year to you all!!

Thank you!!

Peace,

Jeanne



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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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December 31, 2010   9 Comments

Love Beats Hate: Blogging Event – Please Join Us!

The first two quotes below may seem like an unusual way to begin a piece on the topic of LOVE. However, I feel the need to provide some context. While my intention with my Love Beats Hate post is to focus 97% of my energy on writing about LOVE, I feel that before I can do that justice I need to very briefly address the topic of hate. The fact is that while this campaign was inspired by many things, the factor that is probably most responsible for its inception was something incredibly negative that appeared on a social media site.


“One’s dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered”.
~~ Michael J. Fox

This quote perfectly sums up my feelings in regard to the situation mentioned above. While the content that the individual in question posted was despicable and aimed at people belonging to various marginalized groups, the people he was attacking can choose how they respond. He does not have the power to take away anyone’s dignity. While the social media situation I just mentioned is one of the biggest factors that inspired this Love Beats Hate campaign, I wish to point out that individuals who spread such hatred online are the exception rather than the rule. There are far, far more people on the Internet (on social media sites, blogs, forums, etc.) who are caring for one another, supporting each other, and… yes… LOVING one another.


“Hate is too great a burden to bear. It injures the hater more than it injures the hated”.
~~ Coretta Scott King

The quote above really captures the notion that the person disseminating hate is actually harmed more by doing so than are any of his/her targets. While the primary targets in the very unfortunate situation I recently witnessed were people who have a disability or serious illness, other people from various marginalized groups were cruelly attacked there as well. It is empowering to know that we can choose how to react to such hatred and bullying. It is reassuring to know that for every one individual who spreads hatred online, there are far more people who conduct themselves in loving, positive, helpful ways!

Love Beats Hate

With so many people (both bloggers and non-bloggers) joining together to shine the spotlight on LOVE rather than on hate, it is easy to see how a negative situation can be turned into a positive one by speaking out on our own terms about the prevalence of countless examples of loving kindness found online… rather than surrendering to those who engage in spreading hate.

“The greatness of a community is most accurately measured by the compassionate actions of its members, … a heart of grace and a soul generated by love”.
~~ Coretta Scott King

If the greatness of a community is most accurately measured by the compassionate actions of its members, then I have been fortunate enough to discover an enormous number of locations on the Internet that are fairly brimming with love!


“Compassion is not religious business, it is human business, it is not luxury, it is essential for our own peace and mental stability, it is essential for human survival”.
~~ Dalai Lama

I believe it is important to share a determination to shine a spotlight on the positive end of the spectrum of online behavior. My goal here is to focus on the massive, seemingly endless supply of opportunities to interact online with people who exhibit loving kindness, compassion, support, caring, concern and so much more. Too often, our gaze may become focused on the extreme examples of negativity online (cyber-bullying, hate speech targeting marginalized groups, and general mean-spiritedness). To be clear, such negative spaces are real and I find them very troubling.


“Bullies are always cowards at heart and may be credited with a pretty safe instinct in scenting their prey.”
~~ Dr. Anna Julia Cooper

Let’s stop and think for a moment. How often do we hear news stories about positive uses of the Internet such as harnessing the power of social media for good causes that help people? How often do we hear about the benefits of people interacting with others online? Chronic illness patients can benefit even more than most, I believe, due to the nature of their situations. I believe the Internet is a PARTICULARLY valuable asset for people with chronic illness, chronic pain, and/or for persons with disabilities. People in these groups that can, at times, become isolated by their situations. For example, people with chronic conditions and/or people with disabilities sometimes find it more difficult to be out and about due to access issues or simply being too sick to leave the house. I have met many patients online, for example, who are housebound or bed-bound but are able to interact with people online thanks to the technology available today. This access to support is enormously helpful.


“Cruelty might be very human, and it might be cultural, but it’s not acceptable”.
~~ Jodie Foster

Again, bear with me while I touch on the negative to highlight the positive. How often have you flipped on the evening news to hear about subjects such as the unbelievable power of online support groups? (I’m guessing you haven’t seen such a story on the news lately… or maybe ever). How many times have you seen a story in the media about a community of patients (formed online and active entirely online) that rallies around all sorts of patients… including people who are housebound or confined to their beds… with their online friends as an important component of their ability to socialize with others and obtain support and information regarding their conditions? (Here I should point out that it is not appropriate for one patient to give another medical advice. I am referring to patients sharing information which can assist them in advocating for themselves when seeing their own physician/s).

Since I started a blog in June 2008, I have encountered a very diverse group of people online. Just as with life offline, there will always be bullies. However, my experience has been that the caring, thoughtful, considerate people far, far outweigh the bullies.

Whether it is on blogs, social media sites (like Facebook and Twitter), forums, etc., I have encountered some of the kindest, most empathetic, caring people online.


“Shower the people you love with love. Show them the way that you feel”.
~~ James Taylor

I have witnessed patients checking in on each other when one knows another is feeling particularly ill or has recently been hospitalized; I have seen people join forces to support causes they believe in that help people and literally make the world a better place; I have watched people transition from more “traditional” roles as patients to roles as passionate activists who fight for their cause(s) and advocate for themselves (in their own health care and on behalf of the patient population/s they belong to). All of the above are actions executed with love – both love for others and self-love…


“Compassionate action involves working with ourselves as much as working with others”.
~~ Pema Chodron

There is no shortage of love on the Internet. It’s everywhere. Are you skeptical of this notion? If this has not been your experience, maybe you just need to know where to look. For all of the negative stories about incidents that happen online, there are so many more that are positive!

This Love Beats Hate campaign was just started on November 10, 2010! Within only a week, a significant number of bloggers have registered to blog today about Love Beats Hate. Even more people have “liked” the Facebook page Love Beats Hate and/or marked the Love Beats Hate Blogging Event page to indicate that they will be participating in the event. Many others have sent messages on Twitter using the hashtag #LoveBeatsHate.

Please do continue to share information about today’s campaign on Facebook and Twitter. It would be wonderful if we can work cooperatively to share the blog posts of those who are blogging today on Love Beats Hate!

One does NOT need to have a blog (or the ability/time to blog today) to be a part of this event.

Here are some ways you can be a part of the Love Beats Hate event even if you don’t have a blog (or the ability/time to blog today):

  • Share links pertaining to this event on Facebook, Twitter, or via email. (Please use the hashtag #LoveBeatsHate for messages sent on Twitter about this event).
  • You can check the list of bloggers who have registered and simply read their blog posts about “Love Beats Hate” on 11/17.
  • If you wish, you can leave comments on one or more of these participating blogs to show your support for the “Love Beats Hate” campaign and to let the blog authors know what you think of what they have written.
  • On November 17th, you can visit the Love Beats Hate Blogging Event page. You never know who you might run into there. Chances are good that you will encounter a like-minded individual who cares about the event like you do.

In closing, I would like to encourage everyone to generously share the links to the pieces written by the bloggers who are writing for this event. I believe it can make a positive difference.


“A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history”.
~~ Mahatma Gandhi

I wish everyone reading this peace and happiness. I absolutely love blogging and one of the biggest reasons is the sense of love, support, and community I have experienced online. My only hope is that I can give back a fraction of the benefits I gain from interacting with people online.

“Happiness is when what you think, what you say, and what you do are in harmony”.
~~ Mahatma Gandhi

Let’s take care of each other out there. Let’s not let hatred get the attention. Let’s work to make LOVE so abundant that it cannot be ignored or overlooked. I believe we have the power to change the narrative. Let’s focus on fostering and recognizing the loving, caring, helpful actions and words online. This doesn’t mean burying our heads in the sand about the hatred that does exist online. However, let’s not get sucked in to a situation where we are feeding the energy of those who spew hatred. Instead, let’s join together to encourage and acknowledge the love around us each day online. Look around you. It’s everywhere! Let’s work to help each other. It makes us all stronger in the process.

“The best way to find yourself is to lose yourself in the service of others.”
~~ Mahatma Gandhi

It’s not too late to join this event. Please join us right here for blogging:

CLICK HERE TO REGISTER. IT’S NOT TOO LATE!

Again, there are many things you can do to support this event if you do not have a blog or are unable to publish a post today.

Looking for more information?

Love Beats Hate Facebook Page

Love Beats Hate Facebook Blogging Event Page

Or, just follow (and use!) the Twitter hashtag: #LoveBeatsHate.

Love Beats Hate!

Peace…


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

November 17, 2010   40 Comments

Two Years: Reflecting

On June 1, 2008 I set off on an adventure. I had no idea where it would lead. That was exactly two years ago today. It has been a labor of love to be sure and I am extremely grateful for the opportunities and joy it has brought. It has been a wonderful journey and learning experience. I have met some of the kindest, funniest, sweetest, most compassionate people from around the world the past two years!

On that day, I began writing a blog called Jeanne’s Endo Blog. It was never really a blog about just endometriosis at all.

However, when I started writing a blog I knew endometriosis would be one of the illnesses on which I would focus my writing. After all, my journey with chronic conditions began 28 years ago with endometriosis. I was then just thirteen years old when my symptoms started in 1982. Ten years after that, I had a laparoscopic surgery that finally gave me a name for the illness that had turned my life upside down at age 13: endometriosis. It has been said that the average diagnosis of endometriosis occurs 9.9 years after the onset of symptoms. So, the time lag for my diagnosis was a textbook case. This type of delay is absolutely unacceptable. (There are many previous posts about why such a delay occurs – in the 373 posts that preceded this. I encourage readers to check my blog’s archives and/or search box in the right sidebar to locate such posts).

Regular readers here know that I have by no means confined my writing to endometriosis. At the same time, my passion for the endometriosis cause has made it a focal point amongst the posts about other illnesses and causes.

My husband commented a few days ago that my keyboard (new as of about a year ago) has been used so much that many of the letters no longer have their markings. That’s right. I have worn the letters off my keyboard. It has been a busy two years!

As the years have gone on since I became chronically ill in 1982, quite an array of additional illnesses have been added to my list of diagnoses. This link mentions a few of them. I have so much that I wish to say about each of my chronic conditions that I often have an internal struggle regarding how to spend my time and focus my energy.

So many of these conditions need more awareness! So many are poorly understood and under-researched/under-funded. So many involve patients whose experiences are not validated by our society or even their own loved ones (especially true for the “invisible illnesses”). Many patients are accused of exaggerating or of having “psychosomatic” illnesses. I struggle with how to give fair time to each of these illnesses. Which way should I turn? Which illness is facing the most pressing issues? Which illness is having an awareness day/week/month? How can I best help the causes that are dear to me? What is the most efficient use of my time?

Where should I go next when there is so much to do?

The reality is that I can’t do justice to all of the topics that I wish I could write about as frequently as I would like to write about them. I try to but the risk of burnout or escalating symptoms forces me to prioritize as best I can and try to pace myself. Sometimes I am better at this than others. Sometimes I don’t practice what I preach about the importance of self-care. To attempt to do justice to every issue I’m passionate about with my writing tends to throw the self-care I preach out the window. The reality is that I need to practice what I preach and take care of myself so I don’t get sicker and/or burned out from pushing myself too hard. This is probably the most challenging part of blogging for me. If I wrote 24/7, I could never do justice to each illness the way I’d like to in a perfect world. There are just 24 hours in a day. I have some serious health problems that place limitations on me. I may not like it but it’s the reality. Even if I were healthy, what I wish I could write about is beyond what one person can do. I have been trying my best to make peace with this fact.

In addition to writing about illnesses I have, I also advocate for causes I believe in (such as illnesses that do not affect me firsthand but do impact large numbers of my friends – online and off). Also, I spend an enormous about of time in “off the blog” conversations with fellow patients: giving/receiving support, sharing resources and information, working as a team to research issues we care about, etc.

When I converted my blog from Jeanne’s Endo Blog to Chronic Healing, I wanted a blog name that captured my desire to keep writing about many chronic conditions. I wanted the name to expand beyond endometriosis alone. Finally, I wanted it to be positive and reflect healing.

In the course of a conversation with Cassie Germsheid (who re-designed my blog and migrated my data from Blogger to WordPress) about what to name this blog, I decided on the name Chronic Healing. With Cassie’s outstanding help and a great deal of hard work, I was able to realize my goal of launching Chronic Healing on June 1, 2009… the one year anniversary of when I began blogging initially. There was an enormous amount of data migrated. Cassie helped me make Chronic Healing what it is today.

Now, here we are a year later. I cannot express how much I have learned, how touched I have been by the kindness and compassion of so many people that I have had the privilege to “meet” online, how many intense/strong connections I have made with fellow patients around the world, how much support and information I have received, etc. My only hope is that I have been able to touch the lives of those I have met on this awesome journey even a fraction of how much they have touched me. It has been an honor and a joy to interact with so many people who practice compassion and loving kindness each day.

The LOVE expressed to me by my online friends warms my heart and amazes me every day. It truly is amazing and heartwarming. The acts of compassion I have witnessed these last two years are beyond anything I could have imagined.

It would be impossible for me to thank everyone publicly but please accept this post as my blanket thank you to everyone. If you are reading this, the thank you applies to you!

Moving on, there is exciting news ahead that is related to a venture that my friend Amanda recently embarked on. Like me, Amanda has endometriosis. She has a new site that is up and running now and you can check it out by clicking below. I encourage you to do so!

Amanda’s Patch

So what is the exciting news? Well, I had contemplated last week whether to do something to celebrate this two year anniversary but had not decided upon anything. It was just a fleeting thought and I hadn’t decided whether I would or would not have some sort of blog giveaway. The very next day, my dear friend Amanda contacted me volunteering to donate something very special for a blog giveaway.

She had absolutely no idea of my blog’s anniversary date and was simply offering to donate a handmade item because, frankly, it is in her nature to do thoughtful, caring, supportive things like that.

I was very pleased with the timing of Amanda’s generous offer to donate an item for a blog giveaway. For it to be a handmade, beautiful giveaway item from someone I respect so much and for it to unfold at the perfect time for an anniversary giveaway is just wonderful.

It gets even better… The handmade item she is donating for a blog giveaway for this very post fits perfectly with the healing theme of this blog! You see, Amanda uses healing crystals in her handmade jewelry. What a perfect way to honor healing… the very theme of this blog.

Before I share a description of the item or the photograph of the prize that someone reading this will win, I would like to urge readers to check out Amanda’s new online shop. She recently launched her own business and I am beyond thrilled for her! Click below to check out her site:

Please note that the above link will take you to two places (her online shop and her blog). On the Amanda’s Patch blog, she has a section that talks about endometriosis. As Amanda puts it on her blog’s endometriosis section, here is why she included some information about endometriosis on the blog:

“You see, my endometriosis was a massive part of the decision to start Amanda’s Patch and so it had to be involved somewhere”.

I love the way Amanda increases endometriosis awareness through her new business and lets those visiting her shop’s blog know why the endometriosis cause is important to her! She is integrating her personal experience into her new venture in such a wonderful way that can educate people about endometriosis. (Among Amanda’s past blogs is “Me and You at 22″, which many regular readers here will recognize).

Well, I have reminisced enough. I do believe it’s time to get on to the details about the blog giveaway!

Here is a photograph of the beautiful necklace handmade by Amanda:

Prize description of necklace:

Amanda says, “the necklace is made from amethyst and aventurine beads crocheted onto silver-plated copper wire and has a lily-shaped toggle clasp. Amethyst and aventurine are both part of the quartz family, which means they complement each other beautifully and will go with pretty much any other crystals the winner may wear”. Amanda adds that as far as energy is concerned, “all crystals have energy properties”. She also notes that, “all types of quartz have different properties but the family are, quite simply, great for healing negative energies!”

Amanda notes: “amethyst works with the ‘higher’ chakras, particularly the third eye and crown chakras which will help on a physical level for the head and sinus areas as well as spiritually by helping to clear the thoughts and emotionally by helping to clear the blocked emotions” and that “aventurine works on the heart chakra, helping to ease heartache, particularly caused by factors out of our control. Green is a particularly healing color (colors are so important). It helps ground us, find the best in our environments (think of connections with nature) and is great for emotional pain”.

Finally, here is some random trivia about crystals. Amanda tells me that work is being done on using crystals as massive data storage devices. I did a search online and I found a link about this topic here:

Tiny Crystals Could Hold Key To Massive Computer Memory

Interesting, huh?

As with past blog giveaways, the winner will be chosen randomly based on comment number and you may leave as many comments as you wish. (Obviously, multiple comments increase your odds of winning this beautiful crystal necklace). Amanda has generously offered to ship the prize to the winner regardless of their location. So, this contest has no geographical requirements. If you’re interested in a chance to win this lovely necklace, be sure to leave a comment! I’ll pick a winner in a few days. I haven’t decided when I’ll be picking the winner. So, get your comments in now to enter.

Thank you!


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


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June 1, 2010   26 Comments

House Sends Health Care Bill To President Obama

Visit msnbc.com for breaking news, world news, and news about the economy


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


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March 22, 2010   2 Comments

Health Reform And Gender Discrimination

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.


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February 26, 2010   2 Comments

Reid Says Reconciliation Likely On Health Reform

(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:

  • Sen. Daniel Akaka – HI – Unknown
  • Sen. Max Baucus – MT - Unknown
  • Sen. Evan Bayh – IN - Unknown
  • Sen. Mark Begich – AK - Unknown
  • Sen. Michael Bennet - CO - Supporter
  • Sen. Jeff Bingaman – NM - Unknown
  • Sen. Barbara Boxer – CA - Supporter
  • Sen. Sherrod Brown - OH - Supporter
  • Sen. Roland Burris - IL - Supporter
  • Sen. Robert Byrd – WV - Unknown
  • Sen. Maria Cantwell - WA - Unknown
  • Sen. Benjamin Cardin - MD - Unknown
  • Sen. Thomas Carper - DE – Unknown
  • Sen. Robert Casey – PA - Unknown
  • Sen. Kent Conrad - ND - Unknown
  • Sen. Christopher Dodd – CT - Unknown
  • Sen. Byron Dorgan - ND - Unknown
  • Sen. Richard Durbin – IL - Unknown
  • Sen. Russell Feingold - WI - Unknown
  • Sen. Dianne Feinstein - CA - Supporter
  • Sen. Al Franken – MN - Supporter
  • Sen. Kirsten Gillibrand - NY - Supporter
  • Sen. Kay Hagan – NC - Unknown
  • Sen. Tom Harkin – IA - Unknown
  • Sen. Daniel Inouye - HI - Unknown
  • Sen. Tim Johnson – SD - Unknown
  • Sen. Ted Kaufman – DE - Unknown
  • Sen. John Kerry – MA - Supporter
  • Sen. Amy Klobuchar - MN - Unknown
  • Sen. Herb Kohl – WI - Unknown
  • Sen. Mary Landrieu – LA - Unknown
  • Sen. Frank Lautenberg – NJ - Supporter
  • Sen. Patrick Leahy - VT - Supporter
  • Sen. Carl Levin – MI - Unknown
  • Sen. Blanche Lincoln – AR - Unknown
  • Sen. Claire McCaskill - MO - Unknown
  • Sen. Robert Menendez - NJ - Supporter
  • Sen. Jeff Merkley – OR - Supporter
  • Sen. Barbara Mikulski - MD - Supporter
  • Sen. Patty Murray – WA -Unknown
  • Sen. Bill Nelson - FL - Unknown
  • Sen. Ben Nelson – NE - Unknown
  • Sen. Mark Pryor – AR - Unknown
  • Sen. Jack Reed – RI - Supporter
  • Sen. Harry Reid – NV - Unknown
  • Sen. John Rockefeller - WV - Unknown
  • Sen. Bernie Sanders - VT - Supporter
  • Sen. Charles Schumer - NY - Supporter
  • Sen. Jeanne Shaheen - NH - Supporter
  • Sen. Arlen Specter – PA - Supporter
  • Sen. Debbie Stabenow - MI - Unknown
  • Sen. Jon Tester – MT - Unknown
  • Sen. Mark Udall – CO - Unknown
  • Sen. Tom Udall – NM - Supporter
  • Sen. Mark Warner – VA - Unknown
  • Sen. James Webb – VA - Unknown
  • Sen. Sheldon Whitehouse – RI - Supporter
  • Sen. Ron Wyden – OR - Unknown

    This isn’t about politics. At least it’s not for me. For some people, the issue of healthcare is a political one. For me, this is about people, about the basic human right of people to be able to obtain access to basic healthcare to meet their needs. Without reform to the very broken system currently in place in the U.S., the health insurance companies will continue to price gouge customers while providing less and less coverage and issuing more and more rejections for various services, tests, procedures, and surgeries.

    Having had my insurance reject valid claims and having filed an appeal, having had my appeal rejected and then having filed another appeal and having won… I know that insurance companies are excellent at obstructing patients’ paths to needed care, superb at hindering patients’ ability to access care that IS covered as per their contract, and masters at rejecting claims that are completely valid (in the presumed hope that patients will give up and not file appeals, thus resulting in the patient going without the needed care or paying out of pocket for it while the insurance pays nothing for it).

    These practices must not be allowed to continue. A public option will finally force competition so that health insurance companies cannot continue to bully patients the way they have become accustomed to. People who are fortunate enough to have never been seriously ill may not realize just how little the average health insurance company actually covers these days.

    ANYONE can get sick or injured and can quickly discover just how dysfunctional the current system is. No one is immune to the risk of suddenly discovering what so many people already know… that the health insurance system in the U.S. is profoundly flawed, that those lucky enough to have the flawed coverage offered by a typical health insurance company may at some point discover just how little their health insurance premiums are worth, that far too many people cannot afford access to health insurance at all, and that action must be taken to reform this system as soon as possible.

    The longer this mess drags on, the more difficult it becomes to fix and the more people suffer. After decades of talk about reforming the broken system, steps in the right direction are now visible. Every voice matters. I have been busy writing letters to Senators (not just asking for them to support the letter to House Majority Leader Harry Reid but thanking my Senators once both had signed on, to let them know I appreciate them standing up for people like me).

    If you are like me, you’re chronically ill and you are all-too-familiar with how very expensive it can be (even WITH insurance) to obtain needed healthcare.

    I am not naive enough to think that everyone reading this agrees with my perspective and I’m sure that some people reading this don’t. I am writing this post because I am passionate about healthcare access for all, I am sick to death of learning about example after example of health insurance companies making record, windfall profits while patients suffer without care or with insufficient care to meet their needs, and I am bone tired of the decades of TALK about fixing this problem without ACTION to make it happen.

    While I am fully aware that not everyone is in agreement on how to best go about addressing the numerous problems with the healthcare system as it currently exists, the stakes are too high for me not to post this plea for people to contact the Senators marked “unknown” above and request that they become supporters of calling on Majority Leader Harry Reid to pass the public health insurance option through “reconciliation”.

    Healthcare reform has been discussed for decades. I believe there will NEVER be a time when everyone agrees on how to proceed. This matter is far too complex and is attached to far too many special interest groups for there EVER to be a time when everyone will agree.

    As a chronically ill patient who almost lost my house not once… not twice… but three times due to out of pocket medical bills WITH insurance, I have witnessed firsthand how broken the current system is. Since I write a blog about chronic illness topics, I cannot stand by and watch the events unfolding without sharing my perspective.

    I don’t ask everyone to agree with me but I do ask everyone reading this to understand that I know from personal experience just how severely the currently system is stacked against so many. I have friends who have no health insurance at all. This saddens me.


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


    If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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  • February 21, 2010   4 Comments