Helping women with chronic illnesses

Category — General

Today Is World Suicide Prevention Day 2013

Today is World Suicide Prevention Day 2013. For more information about this worldwide event, please click on the banner below:

Please help end the stigma attached to suicide. Suicide is preventable. For more information about suicide prevention resources, please click the image below:

Click above for worldwide suicide prevention resources

For suicide prevention first aid resources in the United States, please click here:

Outside of the United States, please refer to the “worldwide suicide prevention resources” referenced earlier in this post.

Over the years, my blog has been visited by a large number of people who were searching online for information on topics such as “suicide and chronic pain”. I am acutely aware that the number of people living with chronic pain who occasionally have thoughts of suicide is significant. I have written about suicide prevention on this blog many times in the hope that it might help someone find the resources they need.

Please consider taking a moment out of your day today to spread the word about suicide prevention resources. Feel free to share this link on social media to help get the word out. Together we can help de-stigmatize suicide and get resources to the people who need them. If people are afraid to talk about suicidal thoughts, people who need resources may not access them.

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

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September 10, 2013   3 Comments

Time – And Fighting The “Guilt Monster”

Time. Sometimes it seems like we have so little time in which to accomplish so much. The number of tasks before us can just be overwhelming. We may wonder how we’re going to make it through the day.

Other times, the days may seem to stretch out and time feels like it’s passing slowly. Things can feel overwhelming in a different way. Perhaps grief or adversity have made time seem to “stand still”. In these cases, we may wonder how we’re going to get through the day for different reasons.

I’ve never had a rigid, strict writing schedule for this blog. I never committed to anyone (except maybe informally to myself) that I would post at any particular intervals. Nor did I ever commit to communicating “off the blog” via social media and such. When time allowed, I simply did so.

When my schedule was initially disrupted quite awhile back, it was very difficult for me to suddenly stop writing my blog. However, there were circumstances in my life that made it imperative for me to drastically reduce my time online. So I did. When that crisis calmed down a bit, I had hoped to return to some semblance of “normal” with blogging. However, other factors that were out of my control made this all-but-impossible.

Initially, I felt emotions such as guilt, anxiety, and concern. I felt guilt because I knew there were online contact people who had become accustomed to me being much more available; I didn’t want them to feel like I was ignoring them. I didn’t want to hurt anyone’s feelings. I felt anxiety, in part, because I had become so accustomed to using my blog as an outlet that abruptly stopping my writing was difficult. I had concern because my blog receives a fair amount of traffic from people searching the Internet about suicide (often in the context of chronic illness/pain). I was concerned that if someone posted a message that sounded suicidal on my (moderated) blog that I might not see it in a timely fashion to be able to refer the person to appropriate resources in their area. Ever since I stopped my former blogging schedule, I have made it a point to go online as often as I possibly can for the purpose of scanning blog comments looking for anyone who might need referral information. Even when comments were backed up and not getting processed in a timely fashion, I made it a point to address these as quickly as possible.

Once I had devised a new system (however informally) for checking in on my blog when I could, I eventually made peace with the fact that it might be awhile before I could pick up where I left off. I later made peace with the fact that I might not ever be able to “pick up where I left off” (in the sense that I might instead have to “start from scratch”), after spending so much time away from my blog.

It wasn’t easy to make peace with all this after 5 years of writing this blog. As anyone who writes a blog knows, it’s about far more than just writing posts. Having spent a large amount of time “off the blog” relationship-building and interacting with fellow patients (on social media and such), it has been really challenging to stay offline. However, that’s where I have needed to be. So that’s where I’ve been.

We all deal with (and sometimes struggle with) time-related issues in this life. Too little time. Too much time. Things happening at just the right time… or things happening at the worst possible time.

Those of us living with chronic illness often have even greater struggles with time (and guilt) than others. After all, if your illness(es) result in it taking you longer to do certain things than the healthy people in your life, it all adds up. If trips to the doctor or pharmacy or lab take up a great deal of time, that affects the total amount of time available to spend on other things.

Any person living with chronic illness who has ever battled over the phone with health insurance companies or fought to appeal an unfairly rejected claim can attest to the large amounts of time that illness-related activities can suck up. Even once one has factored in all of the more obvious illness-related drains on time, when one looks at activities that aren’t so obviously linked to illness it becomes clear that the effects are more pervasive than many people realize.

If there is anyone out there living with chronic illness who is feeling guilty about what he or she can’t do, if there is anyone feeling anxious about a never ending to-do list, or if there is anyone out there worrying about how his/her illness (or actions/inactions) might negatively impact others… please do yourself a favor and accept the fact that the “guilt monster” won’t do anyone any good. Guilt can really drain your energy. This can, in turn, exacerbate your condition. If you’re doing your best (and I don’t mean pushing yourself past healthy limits), realize your best is all you can do.

If you are feeling anxious about the length of your to-do list, try to ascertain what might make it feel less overwhelming. Can you ask someone for help? Can you disregard items from the list that aren’t as important as you initially thought? Can you break the list down into smaller pieces that feel more manageable? Everyone’s unique. Do what works for you. Often, you will know yourself best and you will be the person to figure out how to feel less anxious. Sometimes it may take a bit of trial and error. As far as worrying about negatively impacting others is concerned, remind yourself that you have a great deal on your plate if you live with a chronic illness and that you need to focus on self-care before you can effectively help others.

All you can do is your best. This circles back to the guilt I mentioned earlier. Beating yourself up about not doing this or that for someone else – when you weren’t healthy enough to do so – isn’t helpful for anyone. It’s actually a waste of precious energy to fret over things that are out of your control. Give yourself permission to assess when you’ve done your best and to resist any feelings of guilt that occur past that point. Feeling guilty about not being able to do something you can’t do (or can’t do without making yourself sicker) isn’t helpful for anyone.

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

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September 7, 2013   No Comments

Five Years Of Blogging!

Here’s to five years of blogging – and five more where that came from. I never dreamed when I started writing a blog that I’d learn so much and meet so many people from around the world!

I am very grateful for having had the opportunity to get to know so many wonderful people over this last five years. Thank you all for your ongoing support, feedback, and friendship!

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

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June 1, 2013   No 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.

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May 7, 2013   4 Comments

March: Endometriosis Awareness Month


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March 2, 2013   2 Comments

Endometriosis Patients Deserve Better

Just when you thought it couldn’t get any worse, it does. One of my readers was kind enough to draw my attention to a “study”. It was published by the fine folks who brought the world the article that I referenced in my last post. (See this post about a “study” on endometriosis that many people found objectionable). Anyhow, the following “study” effectively rubs salt in patients’ wounds. The abstract only is below:

“You are so beautiful”*: behind women’s attractiveness towards the biology of reproduction: a narrative review.

I am unable to post the full article for copyright reasons. Not that I would want it posted on my blog anyway. (Seriously, it’s that bad). The full “research” article was published in Gynecological Endocrinology. As with the previous “study”, I was fortunate enough to gain access to the full article via a friend who is a university employee. Trust me when I say that I am very grateful not to have paid to read the full article referenced above. Personally, I find it beyond disturbing that a gynecological medical journal would publish such an article.

If these articles are what passes for medical research, we have a serious problem. As the reader who made me aware of the second article pointed out, it’s a good idea for people to write in to express their outrage. Unfortunately, I have been occupied offline to the point that it took me over two months to write another (this) post. Therefore, I haven’t had an opportunity to do so as of yet.

While I don’t have any specific addresses for the medical journals that have published these articles, the first article I wrote about was in Fertility and Sterility and this other article was published in Gynecological Endocrinology. While I haven’t had the opportunity to personally investigate funding sources, it’s my understanding (from one of my readers) that the University of Milan School of Medicine was involved in the funding of at least one of these studies. (I urge you to do your own investigation before writing in to ensure that you have the facts).

I believe these “studies” are a disservice for endometriosis patients and others. The bottom line is that if you are looking for a way of speaking out against these “studies”, I agree with the reader who pointed out that writing in is a good idea.

While I wish I had more energy to act myself, I have been in basic functioning mode lately. After having recovered almost completely from the flu, I came down with some other virus. It has taken me awhile to find the time and energy to write this. While I could have expended a similar amount of energy writing to the medical journals and university about these “studies”, I decided I might be more effective, at this time, writing about the “studies” here. My hope is that some of you will gain access to the original articles (rather than just the abstracts) and consider writing letters to the journals concerned expressing your thoughts about these “studies” being published. I also hope someone will take the time to verify that the university named above was a source of funding before writing to it to express your displeasure about the university’s support of such an endometriosis “study”.

While I hope to write some letters myself when I get the energy, I would really appreciate it if any of you who take the time to do so could be so kind as to post a comment to let me and others reading this know that you’ve done so. Personally, I find the “studies” misguided and insulting. There is such a massive need for endometriosis research. It saddens me greatly that there is an entire team of “researchers” who repeatedly publish such “studies” that insult endometriosis patients rather than help them.

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

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February 12, 2013   No Comments

Lesson Learned: The Importance Of Pacing

At the risk of sounding like a broken record, things have been overwhelmingly busy for me in recent months. I have been a ‘busy bee’ to the point that I have really tested my limits.

Unfortunately, this busy schedule has resulted in me having little to no time to be online. There are many people I am long overdue to interact with on this blog, on social media, or elsewhere. Due to circumstances out of my control, I just haven’t been able to spend the kind of time online that I used to (or that I hope to again if things ever calm down). I have had to focus my time and energy on my life offline. While I know this has been a necessary modification to how I allocate my time, I recognize that there are people I know (from interacting online) with whom I haven’t had the opportunity to talk in quite some time. Thank you to everyone who has been patiently waiting for me to return messages and I appreciate your patience more than you’ll probably ever know!

Rather than spend time recounting what I’ve been up to offline (the unusual photo above seemed to fit how I have been feeling – trying to keep everything afloat and make sure everyone is OK lately), I’d rather focus on my attempts to get back into some sort of more frequent schedule for updating this blog. While I doubt I’ll be able to write here as frequently as I once did (at least in the near future), I’d like to make a concerted effort to write as frequently as I can. At the same time, I don’t plan to just write for the sake of writing (while not saying very much). My hope is to write about some of the core topics that have built this blog in the four plus years I have been writing it.

So, please continue to bear with me as I make adjustments to how I divide my time between my “online world” and my “offline world”.

We recently managed to fit in a day in the Adirondacks. It sure helps to slip something fun into the schedule amidst hectic times!

The busy time hasn’t been all responsibilities, appointments, errands, etc. We have managed to carve out some fun time too. This has really helped us deal with everything else that has been going on.

In addition to coping with flare-ups (especially of fibromyalgia and migraines recently), I have been doing physical therapy to heal my ankles. Back in May, I did a large amount of unexpected walking one day. My ankles were sore all summer but I managed to get by. However, in July the pain in my ankles became severely exacerbated. My primary care physician referred me for physical therapy for bilateral Achilles tendinitis. One ankle is now much better (physical therapists are amazing!) but I am still in physical therapy working on getting that other ankle back to normal. Unfortunately, I did barely any biking this summer because my ankles were so sore.

My physical therapist has given me the green light to gradually try some biking. Unfortunately, with the cold weather heading in my opportunities to ride outdoors are becoming limited. Currently, I am looking into whether we can find an inexpensive way to mount my bike on a trainer indoors. My husband has a bike trainer that might fit. We just need to see if it will work for my unusual bike. It’s frustrating that I have had so much pain for several months now simply because I walked too much for my body to handle. I now understand that a sudden increase in the amount or intensity of an activity can trigger Achilles tendinitis. I wasn’t thrilled with the cost but I invested in some sneakers with good arch support (at the suggestion of my physical therapist). I have to say that I think the sneakers are helping me recover more quickly. My body simply wasn’t prepared for the amount of walking that I did. I have learned the hard way not to take on that kind of walking when I have been sedentary due to my illnesses. I pushed myself too hard and the Achilles tendinitis is my body’s way of letting me know to be more careful in the future.

Despite my infrequent blog posts and lack of communication with my online friends, the number of readers subscribing to this blog is higher than ever before. I can’t tell you how much it means to me that so many people have patiently stuck by me this year. It has really bothered me to not be able to write as frequently as I used to. It helps so much to know that people don’t think I have abandoned this blog. While I’ve had communications far and few between (anytime someone posts comments on my blog about having suicidal thoughts, I make sure to reach out to them regarding suicide first aid resources), I hope that everyone who reads this blog knows that I care about them and truly appreciate their patience and kindness while I’ve been sorting out how to prioritize my time in recent months.

Over the years, I have learned that I need to pace myself in order to prevent a worsening of symptoms. In the case of the last few months, that has resulted in less time writing. Hopefully I can increase the frequency of blog posts in the near future. Thank you to everyone. Please feel free to leave comments on this or any post you like. While my response time may be slower than in the past, I will make every effort to get comments posted and replied to as quickly as possible.

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

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October 24, 2012   2 Comments

World Suicide Prevention Day: September 10, 2012

Monday is World Suicide Prevention Day. Suicide prevention is a topic I’ve written about many times in the past. While suicide may be an uncomfortable topic for some, I feel compelled to talk about it because I have encountered several people online in these last few years who struggled with thoughts of suicide. I took a class two years ago to learn about the topic of suicide prevention. What I learned in that class strengthened my resolve to do my part to get the word out about suicide first aid resources.

After taking a look at the latest statistics for the traffic that reaches my blog, I see that it includes people from 172 countries. Therefore, I want to emphasize that suicide first aid resources are available in many places all around world. In the last few years, I have interacted online with people who were having thoughts of suicide that lived in parts of the world far away from me. I found this map of resources to be extremely helpful in identifying the suicide first aid resources nearest them.

Thinking of learning more about suicide prevention? I found the safeTALK class to be extremely informative. It is designed for laypeople (“a training that prepares anyone over the age of 15 to identify persons with thoughts of suicide and connect them to suicide first aid resources”). For more information about a training class near you, see this link.

Suicide prevention (and education about it) is vital. This wasn’t always a topic I discussed openly – offline or online. Over the past few years, however, I have encountered several people through my work online who were experiencing thoughts of suicide. There are many other people with whom I have not interacted directly but who have reached the suicide prevention posts on my blog via some heartbreaking search phrases. While I may not have interacted with them directly, the search strings that led them to my blog left little doubt about the fact that suicide (i.e. suicide prevention, suicide survivor resources, suicide associated with illness) was a topic that somehow impacted them.

Stigma – and other barriers preventing people from finding and utilizing the resources available to help manage crises – cannot be allowed to stop people from getting the help they need to stay safe. Please join me in spreading the word about suicide prevention. Not sure what to say or how to say it? Feel free to simply share the link to this post on Facebook, Twitter, Google+, or even your own blog if you have one. Let’s get the word out about suicide prevention. Help is available. It can be very difficult to find or seek out assistance when one is having thoughts of suicide. Getting the word out about the abundant resources available can make a difference. Please help spread the word about this important topic. Thank you.

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

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September 7, 2012   2 Comments

Magnificent, Magical, Mysterious Music

Many times before, I have written here about music. Recently, I have been under a great deal of stress and music has been enormously helpful to me during this time of my life. Music can be therapeutic, emotional, inspiring, and healing. My husband drew my attention to this fascinating video about music. It is approximately 20 minutes long. I found it to be well worth the time.

Music is an important part of my life. I’ve been reading about music therapy (something I intend to write about in the future). It really is incredible how powerful music can be and how much potential it has to help people. I hope you’ll enjoy this video clip as much as I did.

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

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July 26, 2012   No 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.

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July 7, 2012   2 Comments