Helping women with chronic illnesses

Category — Chronic Pain & Chronic Illness

Fibromyalgia: Remarkably Predictable!

Sometimes I feel as if I sound like a broken record. I’ll try to explain what I mean in this post. After weeks of trying to summon the energy (and find the time) to write something here, I find myself picking a familiar topic: fibromyalgia. Currently, I’m experiencing a flare-up of it. As any fibromyalgia patient can attest, this is not a pleasant state.

For longtime readers of my blog, it will come as no surprise that the change from summer to fall weather has triggered a flare-up for me. (I’ve written about this before in posts such as this and this).

The human brain is a curious thing. Sometimes we block things that are painful from our memories. For example, even though I have had a fibromyalgia flare-up every single fall for many consecutive years now, I must have somehow blocked last year’s fall flare-up out of my mind. This past summer, we were not able to do our typical 5-7 day summer trip due to scheduling challenges. We did manage to get away for 2 nights and 3 days. I’ve written before about some of the challenges I have had traveling due to chronic illnesses and pain. I did not do anything very strenuous during the trip and I took great care not to overdo things to the best of my ability. Nevertheless, the trip took a lot out of me.

Our summer trip occurred approximately a month later this year than in past summers. I was baffled when I just couldn’t seem to shake the greatly increased fatigue and pain that occurred following the trip. (I kept thinking to myself, “why is it taking so long to get back to where I was before the trip?”). Here’s where my “amnesia” comes in. Thanks to the trip occurring later this summer, my trip recovery ran right into the weather change from summer to fall. Therefore, I hadn’t recovered from the trip when the annual fibromyalgia flare-up kicked in.

Once I finally realized I was having a fibromyalgia flare-up, I couldn’t believe I hadn’t figured it out sooner. The thing is that the pain and fatigue I have after traveling feel very much like a fibromyalgia flare-up. The fibromyalgia flare-up timing (in retrospect) was actually very predictable. Apparently some part of my brain just didn’t want to remember or accept it.

In addition to the fibromyalgia flare-up, I have been experiencing more migraines again. I had been getting them much less frequently thanks to acupuncture. Unfortunately, they’ve been getting more frequent again (though not as bad as when they were at their most frequent/severe). Some were triggered by exposure to fragrances, some were tied to my cycle, and there were some for which I could find no explanation. In any event, my acupuncturist (who had moved on to tackling other issues) has been working on my migraines again and it is helping. (Migraines cause my blood pressure to spike significantly and I’ve had to tweak my blood pressure medication quite a bit lately).

In summary, I sometimes wonder if I sound like a broken record when I write a post like this. I know I’ve written similar posts about fibromyalgia and migraines in the past. My intention is not to bore anyone to tears! Sometimes it just helps to write about what I’m experiencing. Hopefully, by doing so I can help others who have similar situations to at least know they are not alone.

Thank you to my readers for your patience these last few months. I know that I’ve drastically reduced the number of posts I write and that there have been some people who have chosen to unsubscribe from my blog. That’s OK. I am doing my best and people need to do what works for them. I can absolutely understand why some people have elected to unsubscribe from my blog. At the same time, I just want those who have stuck with me for the ride to know that I do appreciate you tolerating my long absences from the online world. Between my personal life and my illnesses, I just haven’t been able to write at anywhere near the pace I had written at before. I hope that everyone is doing as well as possible and I miss talking with you on and off the blog.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

October 9, 2013   2 Comments

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 Copyright © Jeanne — All rights reserved.

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

May 7, 2013   4 Comments

REALLY?!? Is THIS Truly Your Idea Of Meaningful Endometriosis Research?

For anyone who isn’t familiar with the “REALLY?!?” skits on Saturday Night Live, I’m including a video clip with an example of one here. When I became aware yesterday of a newly published endometriosis study, these type of skits just popped into my head.

For me, sometimes humor is the single best antidote when something really gets under my skin. So, I guess it’s not too surprising that an SNL skit ran through my head while I was reading about the recently published endometriosis study I mentioned earlier. One of the first things I did I after I saw something about the study was email my friend Endochick.

It is a common occurrence for me to run endometriosis-related items by her when I find them upsetting. I find it helpful to see if she shares my perspective when such situations arise. The study came to my attention because I received a Google alert email notification for it. (She and I are each signed up for Google alerts for articles that mention the word “endometriosis”. Subscribing to these alerts is a means of staying in the loop on endometriosis news). In any event, she had seen the recently published endometriosis study before I emailed her. When I shared my “REALLY?!?” reaction to it, she had a very similar reaction.

At this point, I suppose it’s about time for me to share some information about the endometriosis study I found so objectionable (not to mention objectifying!) The study is called (and I swear to you all that I am not making this title up!): Attractiveness of women with rectovaginal endometriosis: a case-control study. That’s right. The word “attractiveness” is literally in the name of the endometriosis study. (Feel free to pause at this juncture to marvel, let your jaw drop, or swear). The preceding link will only get you to the abstract for the study. (Those wishing to read the entire study are required pay $31.50 to access it).

Needless to say, there is absolutely no way I was going to pay $31.50 to read the full article when it was very evident from the title alone that it would really make me angry! If money were no object, I’d still have no desire to financially support such “research” by paying to access the article. As anyone who knows me can probably guess, I still wanted to get my hands on the full study. The title and a peek at the abstract were not enough. I wanted to see the entire article before writing about it here. Reading online summaries of it just isn’t the same as reading the source article. Thankfully, a thoughtful friend of mine had the ability to access it. So, I was able to read the full article about the study (that was inexplicably published in Fertility and Sterility). I won’t attempt to do an in-depth analysis of the study. Instead, I will share (as briefly as possible) my perspective on the value (or complete lack thereof) of a study such as this one. Obviously, I am not able to publish the full study here for legal reasons.

Let’s just say that the full article was every bit as revolting as I had anticipated. While I was preparing to write this post, I came across the following hilarious article about the study: A study rating female attractiveness: the journal Fertility and Sterility publishes misogyny. Let me clarify why it was funny to me. In part, it made me laugh out loud because one of the great many things I ranted about in my email to Endochick was that I found this study to be misogynistic. So, when I happened upon Dr. Jen Gunter’s characterization of the endometriosis study, I found her words humorous and validating as well.

Here are just a few of the things that ran through my mind when I learned of this study regarding the attractiveness of endometriosis patients. Why not study prevention of endometriosis? Why not find the cause(s) of it? Why not study how to improve the treatment options for the millions of women and girls living with endometriosis? Why not study improving fertility in those endometriosis patients struggling with infertility? Heck, why not (gasp) study to find a cure for endometriosis?

To wrap things up here, I’m going to respond to this study (Attractiveness of women with rectovaginal endometriosis: a case-control study) — “REALLY?!?”-style. The study article was 7 pages long. I’ll try to make this as painless as possible.

It’s “REALLY?!?” time…

(1) The doctors who conducted the research for the aforementioned study looked at what age the study participants first had sexual intercourse. (Having read it in context, I can tell you that this was part of their “attractiveness of endometriosis patients” theorizing).

REALLY?!? — Sigh. You think that studying when women first had sexual intercourse is a meaningful use of your time – when you claim to be studying endometriosis? I think not. Please see the paragraph I posted earlier for some ideas of better uses for your endometriosis research time.

(2) The title of the study is: “Attractiveness of women with rectovaginal endometriosis: a case-control study”.

REALLY?!?That is your study’s article title? Wow, you’re not even trying to disguise the fact that the main focus of your “research” was to have yourselves (a handful of doctors) literally “rate” women’s “attractiveness” on a graded scale?! I have a question for you. Have you ever watched that movie about the allegedly shady origins of Facebook? You know… The one where people were rating students on campus based on their physical appearance using the software that was allegedly some sort of prototype for what we now know as Facebook? That’s what this rating of women’s appearance reminds me of. You’re doctors. Don’t you have medical training that equips you to conduct meaningful studies using scientific methods? Have you no shame?

(3) From the study (in the conclusion section): “Women with rectovaginal endometriosis were judged to be more attractive than those in the two control groups. Moreover, they had a leaner silhouette, larger breasts, and an earlier coitarche”.

REALLY?!? — After all of the time and effort you put into this endometriosis research study, this conclusion (and it is word for word from the study, people) is the best that you can produce? The fruits of all your labors on this study are summarized in the two sentences above? REALLY?!? This truly was the focus of your “endometriosis research” study? Nothing about prevention of endometriosis, improving treatment options for patients, finding clues that could lead to a cure for endometriosis? Just a focus on where the endometrial implants were located in the women judged to be “more attractive”, who had larger breasts, who had a leaner silhouette, and when the women from each of the groups first had sexual intercourse?

While I can’t post the entire study, I can post some quotes from it. So here are a few. Brace yourselves. Bear in mind that these are direct quotes from the endometriosis study published in Fertility and Sterility. I include them here because I think they provide some extra insight beyond my “ranting” into the ridiculousness of the use of time and energy by these researchers (for those who haven’t read the full study):

Some endometriosis study quotes that boggle my mind:

“However, in order to limit potential unintentional seductive behaviors that might have swayed the raters’ judgment, information on the specific hypothesis of different degrees of attractiveness in the three study groups was not given in advance of the physical evaluation”.

“This finding could be explained by higher attractiveness and, hence, higher male sexual demand, even in the adolescent phase”.

“As an example, a higher breast-to-underbreast ratio (large breasts) might have been more attractive to male than female raters”.

Endometriosis researchers/doctors can do better than this. They must. Endometriosis research that improves quality of life for patients while searching doggedly for clues as to cause(s) of endometriosis and while diligently searching for a cure absolutely must take precedence over research that instead focuses on the physical appearance and sex lives of patients!! Seriously, I don’t understand how a study like this even gets funded. Let alone published in a major medical journal. In the meantime, millions of women and girls the world over are living with this serious illness. A study such as this not only misses looking at the many crucial topics of interest to anyone serious about researching endometriosis but it takes resources away from looking at what truly needs to be studied.

I can think of many useful topics for endometriosis researchers to investigate. Studies that focus on the physical appearance of endometriosis patients do not make that list. I find it offensive that doctors at a university are conducting such research and I find it even more appalling that a medical journal such as Fertility and Sterility is giving the study legs by publishing it.

At the risk of sounding redundant, I will ask again… Why not study prevention of endometriosis? Why not find the cause(s) of it? Why not study how to improve the treatment options for the millions of women and girls living with endometriosis? Why not study improving fertility in those endometriosis patients struggling with infertility? Heck, why not (gasp) study to find a cure for endometriosis?

The women and girls living with this illness deserve better than this. An endometriosis study where doctors spend time rating physical attractiveness is not my idea of a meaningful use of time or resources. We deserve better than this.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

December 1, 2012   18 Comments

A Holiday Time Re-Post

Originally posted 12/20/2010 with the title:

Family, Facebook, and Frenzy:
A Holiday Infertility Meditation

Today’s guest blogger, Dr. Diane Rasmussen, is chronically healing from multiple illnesses including Stage IV endometriosis, polycystic ovarian syndrome (PCOS), hypothyroidism and lipo-lymphedema. She has never been pregnant. Her inability to conceive naturally was confirmed when she was forced to have both fallopian tubes removed (one in 2008 and the other in 2009) due to endometriosis-related complications. A professor, she loves both research and teaching.

As Jeanne noted in her wonderful last post, this is a stressful time of year. We’re told (and, for some reason, we believe) that we’re supposed to maintain a big smile full of magical holiday cheer while we host a delicious dinner for friends and family, bake fattening cookies for the office party, buy the perfect gift for the dog groomer, play Santa to our kids…

Wait a second! I can’t do all that! I mean, I don’t have kids!

“Why don’t you have kids?” a woman I had just met asked me recently.

“I can’t have them due to severe endometriosis,” I replied tersely. You’d think I’d be used to this now, I thought to myself. But I never get used to that question. I also never get used to the fact that people with children sometimes assume my schedule is more flexible than theirs, or the fact that people who don’t know the real story probably think my husband of seven years and I are waiting for some inconceivable (pun intended) deadline to start “trying,” or the fact that my friends with children must think I really want to see Junior’s mug-shot-of-the-day every time I log in to Facebook. (Note: if you are my Facebook friend and you do that, I may have hidden your updates some time ago.)

However, those are all mere annoyances. Speaking personally, the time it hurts the worst is when I go to a worship service. All the children are asked to come to the front of the sanctuary to hear a story, and then we have to sing to them as they head to their classes after the story: “Go now in peace/may the spirit of love surround you/everywhere you may go.” But I can never sing: by the time the story is done, I am crying too hard to sing, although I do hope love and peace surround them. It’s not their fault I can’t have a child, after all. That said, their presence makes it difficult for me to attend services, despite the (theoretical) idea that one goes to worship services for spiritual renewal.

Could it get any worse? Cue the holidays. “Christmas is for children,” we’re told. The kids are performing holiday pageants, the toy department at your favourite discount store is overflowing with games and action figures, and your co-workers are all conversing excitedly about the trips they and their kids are taking over the break. Or their kids are coming home from university for a few weeks. Or their kids are bringing the grandkids home. Or whatever.

If you are reading this post seeking answers for how to get through the holidays, I’m not sure I have any concrete advice for you. I struggle with it myself, and I just want December to be over so we can get back to “normal” life. As a childless-by-choice friend suggested, the only sensible ways to get through the holidays are either (1) remaining under general anaesthesia through January 3, or (2) checking into a luxurious hotel with no phone, good books, and room service.

Just don’t forget the underlying message: especially during the holidays, family makes everything worthwhile, and if you don’t have a family of your own, you have nothing.

Wait a minute. Is that true?

I have a supportive husband who sees me as a person rather than a mere baby-making machine, wonderful friends, a Chihuahua who curls up by my side every night, and a rapidly developing career that I love – so many reasons for gratitude! On the other hand, I have multiple chronic illnesses that frequently inhibit me from living life as easily as others do, and I lost my wonderful dad to frontal lobe dementia in May 2010, an absolutely devastating personal loss that will never leave me.

But no matter how I examine my life, no matter how much I ponder my strengths, my weaknesses, or both, I always come to this conclusion: I am more than my (in)ability to have children. And, if you want to be pregnant but are not, you are so much more than that too.

We are definitely the sum of our pasts and our present selves. Sadly, I am watching so many people I know struggle. I know people who have had multiple recent deaths within their inner circles, who have gravely ill spouses, who are going through divorces, who may not be able to see their children (even though they have them), who simply cannot keep up with the societal expectations of the season, and so on. So many of us are just doing the best we can to get through it all right now, whether we can’t conceive, or the fruitcake got burned…

Lately, I’ve been struck by the devastating situations that children face at this time of year (and all year, for that matter). My nightly news broadcast keeps reporting that local charities do not have nearly enough toys for all the children that can only get holiday presents through donations. I have also seen a series of advertisements for a foundation seeking money to buy medications to treat leprosy in impoverished children. So many parents worldwide do not have jobs, or homes, or grocery money.

And then I think, I’m not rich, but I do have a job, a place to live, and a stocked kitchen. And I suppose I could think, It’s not fair! I could provide for children more easily than they could, and they have them! But, in actuality, I’ve been thinking, you know, there is more than one way to “mother” or “father” in this tragic world, and we can all start today…

As I conclude this post, I want to return to the subject of my wonderful dad, who would have turned 68 on December 15. He worked hard, played hard, and made people happy with his kind nature and silly jokes. He exemplified the kind of person I strive to be, and I hope he is watching me from wherever he is with pride. The twist? He was my adoptive father, but I never thought of him that way, and I’ve never known a more loving dad. Of the countless lessons I indirectly learned from him, the most important was that your “family” is by no means limited to blood. I’m not suggesting adoption is the answer for everyone, and I’m not diminishing the devastating loss we all feel with infertility. But I wouldn’t exchange my life (or either set of parents) for anything.

That said, I do believe that we are all one family on this planet, and as my favourite band U2 once brilliantly sang, “We get to carry each other,” a fact that us humans frequently fail to remember. And this particular family is what makes everything worthwhile, and if you don’t have your Earth family (and, hopefully, some love and peace to go with it), then you have nothing.

A fate even worse than not being able to post your own sonogram photos on Facebook.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

November 22, 2012   2 Comments

Chronic Illness And The ‘Groundhog Day’ Effect

Have you ever seen Groundhog Day? It’s where the main character keeps waking up to find the same things happening over and over. Do you ever feel like you’re having a similar type of repetition of patterns? In this case, I don’t mean experiencing the same symptoms over and over so much as how it is to interact with others when this is the case. How do the patterns of interaction repeat?

In addition to thinking about the “Groundhog Day Syndrome”, I’ve been thinking more about how looks can be deceiving for people living with chronic illness(es). I’ve written about this before on many occasions, such as here in Perception Deception.

Sometimes I feel like I’m experiencing a Groundhog Day syndrome of sorts. Sometimes I look at what’s happening in my life and it’s so similar to what has happened in the past that I can’t get over it. In the context of chronic illness and its impact on my life, this can manifest itself in a variety of ways.

For example, I can spend the time and energy explaining my illnesses, symptoms, and limitations to someone – and I can think that the message I was trying to convey was clear – but in the end it may become evident that the time and energy I spent on this was in vain. What I said may not have mattered much… if at all. Whether I didn’t get my message across or it, for whatever reason, wasn’t accepted by the person(s) I was attempting to communicate with, my efforts may not have much impact.

When this happens, I may get frustrated, hurt, and even angry. If I have done my best to explain what I can and can’t do without jeopardizing my health and/or exacerbating my pain levels and I encounter situations where people expect me to find a way to do things I shouldn’t be doing anyway, it really hurts… both emotionally and physically.

I have learned a great deal over the years about setting healthy boundaries and saying no to things that I know will worsen my health. However, there are still plenty of situations where I can’t control all of the circumstances around me. If the rules of the game are changed in the middle on me, no amount of preparation or talking in advance matters much. If I find myself in a situation like this, I find it extremely upsetting. I know I’m not alone in this because I’ve talked with hundreds of other chronic illness patients who have had experiences like this at one time or another.

For me, it is beyond exhausting, beyond frustrating, and beyond painful to find myself feeling forced into a situation that is bad for my health. The problem for me isn’t that I don’t know how to say no. I do. The problem isn’t that I’m willingly pushing myself way too hard either. I’m not. Sometimes despite one’s best efforts to avoid over-exertion or (avoidable) triggering of symptoms, one finds him or herself in a situation where there is no way out. In other words, if one agrees to an activity but that activity unfolds in a very different way than planned, it is sometimes impossible to simply discontinue the activity mid-stream.

There is no magic answer for this type of scenario. I fully realize that no one will be able to post a comment suggesting a way to avoid such situations. I guess I am writing this to vent some deep frustrations about it. Sometimes it helps to just let it out. I guess I feel like I have worked too hard over the last many years with both Traditional Western Medicine doctors and alternative medicine practitioners to take it lightly when my symptoms get needlessly exacerbated – which sends me backwards in my healing process rather than forward. I am not interested in moving backwards. I wish to move forward in the healing process. Having setbacks that could have been avoided frustrates me immensely. I know there are patients out there who can relate on some level to what I’m talking about.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

July 7, 2012   2 Comments

The Chronic Illness Community And You

Let’s start with a definition of community. It’s a word people (healthy or not) use often – but the meaning of it is quite special to those of us who are living with chronic illnesses and interacting with others who are living in similar circumstances.


A social, religious, occupational, or other group sharing common characteristics or interests and perceived or perceiving itself as distinct in some respect from the larger society within which it exists (usually preceded by the): the business community; the community of scholars.

As just about any chronic illness patient can probably tell you, the value and support of the chronic illness community is just extraordinary! Most people I have met in the 30 years I have been living with chronic illness find the validation and phenomenal compassion of fellow patients to be of utmost importance. The chronic illness community provides irreplaceable understanding and it provides for mutual support.

There are times that the only people who seem to be completely able to identify with the struggles faced by persons living with chronic illness are those who are living it themselves. This is where validation becomes so important. Healthy loved ones, friends and co-workers who try their very best to understand the daily challenges of living with chronic illness may, ultimately, not be able to do so. This is where support from people who “get it” becomes key.

As far as compassion is concerned, our chronically ill peers have the ability to empathize since they can relate firsthand to symptoms or experiences. This isn’t to say, of course, that our healthy loved ones or friends or co-workers don’t care. Obviously a great many of them do. (Granted, most people living with chronic illness have had some experience in the workplace that involves people who are not very compassionate or understanding). The majority of healthy people around us, in my experience, do make attempts to understand and do try to show that they care. (Realistically, there will always be people who don’t fall into this category but I think most people try in their own ways to show their compassion).

At the end of the day, though, I believe the reason that chronic illness communities of all sorts (online and off, support groups, messages boards, blogs, Facebook groups or other Facebook interactions, Twitter niches for chronic illness patients to interact, etc.) are so valued, so highly utilized, and so appreciated by such large numbers of patients all stems back to these core elements… validation and support.

So very many of the experiences I have had firsthand – and those I have witnessed other patients having – are examples of such an excellent outpouring of concern, caring, and empathy from patient to patient in all sorts of situations. I feel extremely fortunate to have gotten to know so many wonderful, thoughtful people on my own journey!

The chronic illness community truly is an amazing group of people. We are fortunate to live in an era where technology enables us to connect with far more people than we could have in years past. At 43 years old, I remember the pre-Internet days of searching for medical information and trying to find other people living with the same symptoms as me. It’s wonderful to have the Internet to enable us to make far more connections than could be made otherwise… with people the world over!

What do you appreciate about the chronic illness community? How have you benefited from being a part of it? How does it make you feel to be able to give and take information, engage in mutual support, and even help fellow patients cope with the stress of living with chronic illness(es) and chronic pain?

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

May 24, 2012   4 Comments

Exhaustion: Five Tips For Coping

What happens when you were already tired to start… truly exhausted… and then a crisis situation of some sort (or multiple crises) crops up – resulting in you expending energy you didn’t even know or think you had and leading to a more profound state of exhaustion that makes day-to-day functioning quite challenging?

What do you do if you’re so drained that basic daily functions are quite challenging? What do you do if you’re in so much pain that it’s difficult to think and you’re too exhausted to think straight about how to best deal with that pain (i.e. when some of your normal coping strategies start going out the window because you’re too tired to organize your thoughts)? What do you do if you’re so drained that you can’t keep up basic correspondence (i.e. letting people know that you’re OK)? What if you are experiencing stress that drains you emotionally and adds to the physical exhaustion? While it might seem like common sense for anyone who feels utterly exhausted to “simply” back off on some of their activities to avoid burnout, this can be easier said than done sometimes. There are times this requires tough choices to be made.

Five tips for coping with exhaustion:

  • This first one is obvious, I know. However, it’s also neglected too often by many people. (I am guilty as charged on this one plenty of times). Our fast-paced society can make it difficult for us to listen to our bodies and do what we need to do to be as healthy as possible. The first tip is to rest as much as you possibly can. Be honest with yourself about how much time you truly have available for rest. It may be more than you initially think! (Some of the “mandatory” activities may truly be optional). Learn how to say no to the optional stuff.

  • To expand on that last point, it’s worth taking time to prioritize and eliminate/delay things that need to wait until later or may not really need to be done at all. You only get one body. Taking care of it must come first – or everything else can fall by the wayside when a total crash or burnout occurs.

  • Give yourself permission to skip things. This can include skipping things you love or miss. Skipping things on a temporary basis to get the rest you need to cope with everything you have on your plate is rarely easy to do but it is important for preventing exacerbation of your symptoms or even introduction of new ones. The hardest things to skip are often interacting with the people we care about. The way I see it is that I have worked hard to explain where I’m at to people and those who understand my situation (some to a greater or lesser degree) will understand that I am not ignoring them, being rude, forgetting about them, etc. They will understand if I need to focus my energy on rest and healing during times that are more challenging. I have to get past any feelings of guilt to enable myself to do what’s best for my body.

  • See if there are any ways you can simplify daily tasks. Is there an easier way to do the same task (something that you’ve never tried before?) Is there someone who might be able to help you with certain tasks?

  • Make peace with the fact that you can’t do everything you wish to do when you wish to do it. Give yourself permission to stagger things out. Allow yourself to work through anger and frustration while also moving ahead and accepting that the odds are on your side for things getting better over time. (Crises don’t last forever… even if they seem to when we’re in them)! Accept the fact that you are doing the best you can in your unique situation. (Remember that everyone’s situation is unique. No two people are exactly alike). Whether one has a chronic illness or is perfectly healthy, time management is an issue that impacts everyone. The trick for people living with chronic illness (especially when dealing with some sort of acute crisis or crises) is that time management becomes that much more difficult.

    In the end, all any of us can do is our best. We aren’t likely to please all of the people, all of the time. Accepting this fact can be helpful… especially in those extra-busy and/or extra-stressful times. Weeding out one’s “best” from one’s “best if one were healthy which one is not” is key. Your “best” 20 years ago and your “best” now may differ wildly. That’s alright. It is what it is. Above all, it is imperative to prevent burnout. That’s not to say that it’s never a good idea to test the waters and push the boundaries a bit. What I have found is that the key for testing the waters is to closely monitor how symptoms are affected by increased/different activity. Being prepared to back off when symptoms do get exacerbated is very important.

    Now, if only I could consistently implement these tips myself… I might feel better! (I’m working on it). As anyone I normally interact with online (including on this blog) can tell you, I have backed off immensely in my online activities. Unfortunately, when I did so it was not to take a break or a vacation. It was to replace that time spent with (crisis-related) activities that were more draining and stressful. So, it will take me some time to resume anything resembling a “normal” schedule… but I intend to work on it. In the meantime, I won’t be able to catch up on messages anytime soon. So, please know that you are in my thoughts even if this is the only place you hear from me for awhile. Thank you for your patience.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

  • April 24, 2012   2 Comments

    Getting Back In The Saddle

    It can be quite difficult for anyone to “get back in the saddle”, so to speak, when the normal routine has been disrupted. I think it’s especially challenging for those living with chronic pain and chronic illness. As those living with chronic conditions know, having routines can be especially helpful for riding out the storms.

    While one’s daily routine may be thrown off kilter by things like symptom flare-ups, surgery, and new diagnoses… it can still be very useful to have a routine to act as a framework. Even if that routine has to be tweaked, improved, or temporarily abandoned for brief periods, it can be helpful. By the way, when I talk about getting “back in the saddle” I’m speaking in a figurative sense (as anyone who has read my blog regularly understands).

    So, what is one to do when the daily routine has been turned upside down, shaken up, altered? That is a very good question. In my own situation, it is abundantly clear that I may never be able to return to the pace I kept in the past. Even if the offline situation that has disrupted my usual routine were to be magically resolved (no, it’s not resolved), I honestly don’t see how I can return to writing as frequently as I did before. Even if I had the time and energy to resume that kind of schedule (no, I don’t), this has been one of those life experiences that forces a person to re-assess everything.

    To be clear, I will most definitely be continuing to write this blog. I also look forward to getting back to some sort of routine with it… even if that’s not the routine it used to be. However, I’m not sure yet how my routine will differ from what it was in the past. My sense is that I’ll likely be writing about nearly all the same topics but just less frequently than before. However, I’m not sure yet how it will play out.

    With the offline situation still unresolved and with my energy level far lower than I’d like it to be, I recognize that I need to pace myself and focus on self-care issues (getting enough sleep, eating right, managing my time in healthy ways, etc.)

    Thank you to my online friends for your patience and understanding while I sort things out and attempt to begin the journey of getting back to a more normal schedule. There are many unanswered messages from people that I need to address and I don’t know when I will get to them. I just need to take one day at a time. It will be a gradual process but I hope, at some point, to get back to a similar routine to what I had before… just calmer in pace.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

    April 16, 2012   2 Comments

    Sleep, Sleep, Sleep…

    There is so much I want to do.

    There is so much I want to say.

    My body, however, won’t cooperate with my wishes… and that’s OK.

    No matter how much there is to do.

    No matter how much there is to say.

    It will all have to wait for another day.

    Right now… all I am concerned with is getting some sleep. No matter how much I’d rather be doing a number of other things, I need to listen to my body. It is screaming out for sleep. So, I am going to listen. Off I go to do just that…

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

    January 10, 2012   4 Comments

    Could Endometriosis Diagnosed In 18 Month Old Be Related to Toxins?

    This week, I came across an abstract that riveted my attention:

    Endometriosis-associated Serous Borderline Tumor and Endometrial Stromal Sarcoma of the Ovary: A Report of a Rare Lesion in an Infant

    [Trigger alert: Before I proceed, there are some photos of young children in a video clip at the end of the post. I just wanted to let those who are struggling with infertility know that before you scroll down any further].

    Personally, I think that this child’s case could provide endometriosis researchers important clues. My hope is that the researchers will continue to follow this child with long-term studies. I believe doing so may benefit not just the child mentioned in the article but the endometriosis community as a whole.

    Having never heard of an 18 month old child diagnosed with endometriosis, my curiosity was immediately piqued. As it turns out, this is the first such case ever reported. Prior to reading the actual article, the first thought that popped into my head having seen the abstract was, “I wonder if the fact that this child is in Hong Kong has anything to do with it since that area is known to be very high in dioxin”.

    The article did not mention dioxin. The thought that popped into my head was simple wondering on my part that was rooted in the fact that I have read about and seen videos clips over the years regarding waste management practices in China (and the sad fact that many countries ship their toxic garbage there illegally).

    Since the medical community has not agreed upon “the cause” of endometriosis (and since I personally suspect there are many causes), I don’t think anyone can say why this 18 month old girl has endometriosis.

    The case report titled, “Endometriosis-associated Serous Borderline Tumor and Endometrial Stromal Sarcoma of the Ovary: A Report of a Rare Lesion in an Infant” was published in the International Journal of Gynecological Pathology (January 2012 – Volume 31 – Issue 1 – p 98–102).

    The full article can be accessed here and the authors are: Ronnie S.L. Ho, M.B.B.S., Godfrey C.F. Chan, M.D., F.R.C.P., Shau Yin Ha, M.B.B.S., F.R.C.P., and Philip P.C. Ip, M.B., Ch.B., F.R.C.Path.

    From that article:

    “There was no maternal history of endometriosis and the mother herself did not take any hormonal medication either prenatally, or during the 1 week of breast feeding after the child was born. On physical examination, the child showed no evidence of precocious puberty or thelarche.”

    Back to the topic of endometriosis in general… There is no established cause of endometriosis. There are numerous theories (and some of them make sense to me). In my opinion, there may never be a sole cause of endometriosis that is agreed-upon by the medical community. I suspect that there are causes (plural) of endometriosis. There is some research that points to things that are linked to endometriosis and they may well be determined at a later date to be within the multiple causes I suspect are behind endometriosis.

    One thing that has been linked to endometriosis is dioxin.

    For those who are not familiar with the studies done on rhesus monkeys regarding endometriosis and dioxin exposure, click here for more info. That link goes on to say:

    “Based on animal studies and observation of wildlife, impaired fertility is a result of exposure to endocrine disruptors. Infertility affects approximately 40% of women with endometriosis”

    From Greenpeace:

    There has been much attention to the topic of toxin emissions in Hong Kong:

    Again, on a hopeful note I really do think that this case of the 18 month old diagnosed with endometriosis could provide endometriosis researchers important clues. Obviously, my heart goes out to the child and her family. I cannot imagine what it would be like to have an 18 month old child be diagnosed with endometriosis. I certainly don’t mean to be insensitive to the child or her family when I suggest her case may provide hope for the endometriosis community and possible clues for researchers. I just think that the mere fact that an 18 month old child has been diagnosed with endometriosis throws a total curve ball at the notion some doctors have had (the theory some doctors speak of as if it’s a/the cause: retrograde menstruation). Obviously, retrograde menstruation was not behind this child’s case of endometriosis!

    As I indicated earlier, the question I posed initially wasn’t really a fair one. To my knowledge, no one can definitively answer the question I posed up front…

    Could Endometriosis Diagnosed In 18 Month Old Be Related to Toxins?

    Closing on a sober note…

    In the course of searching online about dioxins in China for this blog post, I came across the following video clip. I’ve seen videos before about waste management practices in China and the high rates of dioxin there. This segment tied that together with discarded goods that are illegally shipped to China. What are your thoughts on it?

    (I apologize in advance for any ads that may appear within the following clip. I don’t have any control over the ads CBS includes).

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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

    December 22, 2011   2 Comments