Helping women with chronic illnesses
ChronicHealing.com

Category — Acupuncture

Getting Back On Track!

The five year anniversary of me starting a blog will be in about three weeks. In all of that time, the longest I’ve gone without writing has been recently. It definitely hasn’t been easy for me to step away from it but there have been various reasons that I couldn’t maintain the pace I had set before. I am hopeful that I’ll get things back on track as soon as possible.


It really bothered me that I was unable to be active online this year for Endometriosis Awareness Month. Little did I know when I posted that short video on March 1st that it would be my only March post! Sometimes we just can’t predict what life will throw at us, though. So – as I’ve said before – I try to speak out for endometriosis awareness, as best I can, throughout the year.

Aside from managing my own illnesses, I have been spending time helping a relative who was recently hospitalized, I’ve been helping other family members with various issues, I did some volunteer work that I was “recruited” for, and I was summoned for jury duty.


I have written many times about the importance of pacing and the frustration I feel when I am unable to write regularly on this blog . While I have missed the time I’ve recently had away from this blog, I know that I needed that time to focus on other activities.

In recent weeks, I have been dealing with the same type of fibromyalgia flare-up I get every year when winter turns to spring. While my migraines have been less frequent and less severe since I’ve been getting acupuncture for them, I’ve still had some.

In regard to jury duty, it was an interesting experience. I have been summoned for jury duty many times over the years (far more than most people I know). The last time I was called, I was extremely sick and it was out of the question for me to go in. My doctor had written a letter that excused me from jury duty.


This time when I was summoned, I really stopped to ponder whether I thought I could do it or not. Without a doubt I am still in poor health. My fibromyalgia has been flaring and it really hurts to sit still in one spot for any length of time. That one illness alone would make jury duty a challenge. At the same time, I am not in the very dire shape I was in when I was last summoned. So, I discussed the summons with my primary care physician. She was fully prepared to write me another letter (and she’s not one to take writing such letters lightly); she knows how sick I am and how difficult it would be for me to sit still for so long without moving/stretching and to have infrequent access to a rest room (considering that my interstitial cystitis can cause severe bladder pain and make for unpredictable timing as far as the need for a rest room).


However, I look at jury duty as an important civic duty – like voting. I wanted to give it a shot if I thought I might be able to do it. So, she advised me to take advantage of the time to talk with the attorneys privately about my concerns (rest room access and avoiding exposure to fragrances were the two things I was most worried about). I had been through the voir dire process once before and was already planning on talking with the attorneys privately before my doctor suggested it. So, I screwed up my courage and took a pass on the note from my doctor.

My jury summons number was low. So I knew from past experience I would be called in on the first day. Sure enough, when I called the automated message it said to report the next morning. To make a very long story short, I ended up being one of the people called to sit in “the box” to be questioned by the attorneys. The judge had given some basic details about the case. It was a medical malpractice case that was expected to last two weeks! At this point, I will be perfectly honest and say that I started to wonder if I’d made a mistake passing up that note. However, I patiently waited for the opportunity to speak with the attorneys privately. This came at the very end of the first day. (I will say that I wasn’t sure how I would make it to the lunch break that first day; my bladder was not happy)!

© Jenny Rollo

The private discussion with the attorneys enabled me to share my concerns. In addition to explaining my concerns regarding rest room access (mainly because of IC) and worries about fragrances (and their potential to trigger migraines or even make me faint due to MCS), I had to fill them in on the 2008 surgery I had – which did not go as intended and which has resulted in permanent damage to my left leg (long story). After listening all day to questions pertaining to the medical malpractice case (where a man is now disabled following knee surgery that did not go as planned), I knew that I needed to disclose my own history with having had surgery that has resulted in lifelong damage to the nerves in my leg. We were instructed to return the next day and then I was excused by lunchtime the second day. I have no doubt that my leg situation made me an unwanted juror for that particular case. The good part was that I had the satisfaction of knowing that I had done my best and given it a shot. While there would have been absolutely nothing wrong with me being more cautious and having simply accepted a note from my doctor, I’m glad that I gave it my best shot.


In any event, I am really thankful (and lucky!) that the long stretches where I haven’t posted anything here have not resulted in people unsubscribing from my blog. On the rare occasions I’ve hopped online long enough to take a look at my blog statistics, the traffic has not dipped down in any kind of significant way. I can see that people are still reading my blog even when the most recent post is outdated. I can’t begin to express how grateful I am that people have been so patient and understanding. It’s too soon to tell when I’ll be able to get back on track the way I really want to but I am making every effort to do so.


In less than a month, it will be five years from when I started blogging. The thoughtful people I’ve met – through this blog, through my YouTube channel (which I really need to update more often!) and through social media – continue to amaze me. Thank you very much for your ongoing support and patience!


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


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May 7, 2013   4 Comments

Major Migraine Month


The best way to sum up the past month health-wise is:
My head hurt every day.


The migraine pain (over the past month) has ranged from mild at times to very severe at other times but it has never left completely (except for about three hours one day and for a couple of hours another day when I thought it was leaving but it quickly came back full force – even harder than before).

Sensitivity to light and sound have been severe all month. Sounds I normally wouldn’t be bothered by are very painful to my ears and head. I have had waves of nausea coming and going. Occasionally one eyeball will hurt for about two to three hours before dissipating.


Yesterday was the lowest level of migraine pain I have had since March 31st. I started to think the migraine was finally lifting. When I woke up today, my head was still not normal but I would no longer call what I have today migraine pain. I believe that I am now in the postdrome phase described here. I am hoping that my head will feel 100% normal soon. It has fooled me before but I think it’s really lifting this time. Time will tell.

Unfortunately, I don’t have the energy to write in very much detail about what has been happening with my migraines these last few months. In a nutshell, though, I was having some reduction in the number and frequency of migraines (after starting both physical therapy for cervicogenic triggers for migraines and acupuncture to treat migraines). I was still getting migraines but they weren’t as bad once I had started the cervicogenic migraine physical therapy and acupuncture focused on them. I was grateful to have some improvement. I knew there was no quick fix and that any improvement was worth appreciation.

Prior to starting physical therapy and acupuncture for migraines, I had noticed patterns in the timing of my migraines that suggested hormonal fluctuation is one of the major migraine triggers for me. The wonderful physical therapist who has been working on treating the migraines triggered by cervicogenic issues thinks I need to talk to my doctor about the hormonal situation. I plan to do so in my next appointment with my primary care physician (next week).


In the meantime, I saw the neurologist Thursday and it was an enormous waste of time. It was difficult for me to drive to/from that appointment. (If I don’t feel like it’s safe for me to drive, I don’t… no matter what I have scheduled. It’s not worth risking an accident). For nearly three weeks, I didn’t even feel it was safe to drive around town – much less to an appointment an hour away. Thursday was only the second time in a month that I had driven for more than five minutes. The amount of time, money and energy that were utterly wasted on that appointment totally frustrated me. That tale is far too exhausting for me to relive at the moment but the good news is that the brain MRI (looking for multiple sclerosis) yielded normal results. Maybe someday I’ll have the energy to get into more detail regarding why I believe the neurologist appointment Thursday was a waste of time.

I haven’t been online much but on the rare occasions that I have, I’ve gotten great support from other people who experience migraines. Let’s just say that apparently I’m not the only one who has experienced difficulty in finding a good neurologist for treating migraines. Thank you to those of you who have reached out to me regarding your own experiences with and knowledge of migraines. I really appreciate your support.

Now, please bear with me for going on a tangent about sleep apnea treatment… I had previously mentioned in passing the difficulty I have had finding a CPAP headgear to treat my sleep apnea. I got a new CPAP headgear on March 24th. I was very excited that (after years of unsuccessfully trying to find a headgear that my head could physically tolerate – no matter how carefully I screened out ones with materials I have a known allergy or sensitivity to), I had found one my head could physically tolerate (no sores on my head due to a reaction to the material of the headgear)! The fact that I had finally found one (pictured) that I wore night after night with no adverse reaction on my scalp was the good news.


Click for photo source.


The bad news is that the daytime fatigue and sleepiness I have experienced in about the last month (despite having gotten plenty of sleep at night… more than usual, in fact) has been so severe that I decided about a week ago to try not using the CPAP for awhile to see if the fatigue improves. (I am currently trying to determine whether the new plastic tubing for my CPAP machine might be out-gassing chemicals that are exacerbating my multiple chemical sensitivity, whether the fatigue is migraine-induced, or both). Since stopping CPAP about a week ago, the fatigue has improved a bit. However, the migraine has improved in that time too. So, it remains to be seen what caused the incapacitating fatigue and sleepiness I have been experiencing in the past month. I would very much like to go back to wearing my newest headgear, pictured above, if I can rule out the plastic tubing that attaches to it as causing any of my fatigue and sleepiness problems in the last few weeks. I know the risks of untreated sleep apnea (i.e. that cardiovascular trouble has been found to be up to three times more likely):

Click for photo source.


Needless to say, I am anxious to resume treatment for the sleep apnea since I don’t wish to increase my odds of having cardiovascular trouble. I’ve tried running the CPAP machine when I’m not wearing it to flush out the plastic tubing but I’m not sure how much good that has done, if the tubing is causing symptoms. I washed the tubing with distilled water, as directed, before using it. Other than allowing it to air out over time, I don’t really know how I can get it to out-gas more quickly.

Hopefully, the fatigue is from the migraines and not the CPAP tubing and I will be able to resume wearing my CPAP headgear soon.

My husband reports my snoring had stopped when I was using CPAP. According to the doctor who ordered the sleep study that diagnosed the sleep apnea, treating that should help the symptoms of all of my illnesses (since it’s not healthy to stop breathing throughout the night). The sleep disorder clinic had told me when I was diagnosed with obstructive sleep apnea that they recorded zero restorative sleep for me. Zero. I hadn’t had dreams in many years because I never reached that stage of sleep. With the CPAP machine, I was having dreams. That tells me I was getting into a deeper level of sleep than I had in years. Yet I was more tired than ever when I woke up each day. So, the trick now is to sort out whether the new plastic tubing is out-gassing chemicals that are causing the fatigue and sleepiness or not. In the meantime, I am seeing how I fare without it. Since the severe fatigue and sleepiness started right about when I started the CPAP and right about when this most recent migraine started, it’s hard to know for sure what’s the cause.

Managing the migraines and sorting out whether the CPAP machine is or isn’t causing the severe fatigue/sleepiness are what I’ve been focusing on lately. Other factors have prevented me from being online very much as well. Thank you for your patience. I am going to try to resume a more typical schedule for blog posts as soon as I am able. Several of you have sent me messages asking how things are going lately. I appreciate you thinking of me and would like to thank you for your support.



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


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April 30, 2011   12 Comments

Endometriosis Awareness Month: Migraine Detour

What do the woman pictured and I appear to have in common?



(1) We both have wrinkle-free, youthful skin.
(2) We are both wearing eye makeup.
(3) We are both feeling migraine pain.


If you guessed number 3, you win the prize. Unfortunately, I have no prizes to give out. So, hopefully you will be satisfied to have as your prize the knowledge that you guessed right. Did the blog post title give it away?

Hopefully tomorrow’s acupuncture session will expedite getting this migraine to pass so that I can get back to working on Endometriosis Awareness Month. In the meantime, please sign and share the endometriosis awareness petition (see right sidebar for link).

Thank you for your patience.
The skinny needles my acupuncturist uses.


P.S. For those wondering, my youthful skin took a hike awhile back and I don’t wear makeup. So, that leaves number 3 by process of elimination. While I cannot prove the woman pictured has a migraine, answer 3 is most logical due to process of elimination. Yes, I have insomnia that is making me punchy now. Thus the silly post.


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 12, 2011   4 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

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.


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November 17, 2010   40 Comments

Fibromyalgia Flattened

Have you ever felt like you were flattened by a steamroller? Well, other than a few brief appearances here and there on Facebook, I haven’t been online much. The fibromyalgia flare-up that began several weeks back escalated within the last couple of weeks. There have been times where I have felt like I was just flattened by fibromyalgia. Getting out of bed in the morning has been a Herculean feat. The stiffness and pain have been really intense in the morning. Some days it has been difficult to walk from room to room. Every day, I have had severe head to toe pain.

On days like today when it rains, I dread the idea of needing to go outside. Rainy days aren’t just a problem if I venture outside. I don’t have to go or look outside to know it’s rainy. I can feel it no matter where I am. Sometimes, I feel like a human weather vane. I know the air will hurt my skin stepping out into a rainy day. My body feels like one big bruise. Everything really hurts.

I love fall. I always have. Fibromyalgia will not steal my love of fall from me. At the same time, as I wrote last year in Fibro Fall, I am fully aware that the change of seasons from summer to fall wreaks havoc on my body. It is what it is. I can’t control the weather.

On Saturday, I had my regular acupuncture appointment. When I have an appointment, I inform my acupuncturist about which symptoms have been bothering me since my last appointment. Needless to say, I filled him in on the fact that my fibromyalgia pain has been flaring-up badly. I was so happy that my acupuncture appointment was on Saturday. I love acupuncture so much!

In addition to this fibromyalgia flare-up, I have been dealing with an interstitial cystitis (IC) flare-up. (I am thankful that I have the ability to do bladder instillations at home). As is so often the case when my IC flares up, my irritable bowel syndrome (IBS) has been flaring up too. Somewhere in there I had a period that was more challenging than most. The cyclical rectal bleeding that prompted colonoscopy number four in April 2009, which I wrote about previously here (Colonoscopy Results With Pictures) was worse than usual. (If you have cyclical rectal bleeding and your doctors tell you it is unrelated to endometriosis, just know that there are other patients who have this. See your doctor if you have this symptom). In my case, the bleeding happens every month and generally precedes my period by two days.

In addition, my head was killing me during my period (as happens with every period now, to one degree or another). So, I haven’t been up to writing lately. Throw in a few mild multiple chemical sensitivity (MCS) reactions for having the audacity to leave the house for good measure and it has been challenging the last couple of weeks.

Anyhow, my fibromyalgia is still flaring but I am doing better than a few days ago. This is quite possibly related to the fact that I had acupuncture on Saturday. Having talked with many online friends who have fibromyalgia, I know that I am not alone in having a flare-up now. My thoughts go out to fellow patients who are dealing with increased pain at this time. I have been feeling flattened by fibromyalgia. If only the fibromyalgia itself could be flattened instead of the other way around.

On a random side note, I would like to thank my Facebook friends for supporting this blog on NetworkedBlogs and helping it to be ranked in first place there for endometriosis blogs. Interested in following this blog on NetworkedBlogs on Facebook? Just click here: here. Thank you.


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


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September 27, 2010   29 Comments

Father’s Day and Infertility

This year, I published two posts related to Mother’s Day and infertility (A Non Mother’s Day and Mother’s Day Mourning).

It is important to remember that Father’s Day can be a challenging and painful day as well. Men affected by infertility hurt too!

This RESOLVE: The National Infertility Association article may be helpful:

Coping With Mother’s Day and Father’s Day

Infertility affects couples in many different ways. It can be a crushing, devastating, consuming experience. Our society as a whole tends not to comprehend the degree of suffering involved. Many suffer in silence. Someone you know may be struggling with infertility (whether you are aware of it or not).

Often, people make comments to infertile patients that hurt long afterwards. Our society needs to do a better job supporting infertile couples. Typically, the media’s portrayal of infertility is not a very accurate depiction.

My thoughts heading into the upcoming weekend are with all of the men and women who are unable to become parents. (I decided not to wait on posting this because my blog has already had visitors to the post I wrote last year for Father’s Day. So, I thought it best to get something posted now… as some are already transitioning into activities such as traveling to see relatives, etc). In addition to keeping infertile couples in my thoughts, I’m thinking of those who have suffered pregnancy loss. (In some cases, couples fall into both categories).

Finally, Father’s Day can also be difficult for people unaffected by infertility. For example, it can be a difficult day for those who have lost their fathers or for parents who have lost their children.

Please keep those who are grieving or processing loss in your thoughts. Thank you.


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


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June 16, 2010   4 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.


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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June 1, 2010   26 Comments