Helping women with chronic illnesses

Category — General

When It’s All A Blur…

Thus far, this entire year has been a blur of crises, problems begging for solutions, and health issues. I cannot believe it’s already June!

What does a person do when everything becomes a blur? When events unfold so rapidly that it feels impossible to get centered and to get one’s bearings? At what point does a person have to decide to discontinue working on a crisis situation because a satisfactory resolution is impossible or because one’s body and mind simply can’t handle the continued focus on that crisis? What happens when problems simply cannot be solved… even with the best minds working very hard to reach a resolution? What if creativity, perseverance, and tenacity simply aren’t enough to reach a satisfactory resolution? What if sheer will isn’t enough? How does one decide when to back off of a project to prevent endangering one’s health? At what point does one conclude (and how is that conclusion made?) that one’s health is suffering due to a given situation?

These are some of the questions I have been struggling with these past few months. How far can I push myself? How far should I push myself? Where are the boundaries? What is the likelihood that my efforts will help solve the problem at hand? Even if my efforts look like they might make a difference, at what point do I need to stop what I’m doing anyway to protect my health from further deterioration?

There are no easy answers. I have found it very difficult to decide when to forge ahead and when to back off. Having lived with chronic illnesses for 30 years now, I am a fighter. It’s often hard for me to know which fights I have to walk away from. This is especially true when health-related situations are involved. It’s really, really hard for me to back off from trying to solve/address a health-related problem. However, I have been coming to terms with my need to do that for a given (offline) situation. It hasn’t been easy but I am at peace with the fact that I have been transitioning away from a situation that is too complicated for me to solve… if, in fact, anyone can do so.

In the meantime, I have really missed writing here as often as I used to. The fact of the matter is that the blurry keyboard pictured above isn’t too far off from how my keyboard looks to me at times lately. No matter how much I want to write, sometimes I just can’t lately with everything that has gone on. There are not enough hours in the day to get everything done. Exhaustion can do a number on one’s body. I have been trying hard to “practice what I preach”, so to speak, and to really listen to my body. Sometimes I’m better at doing this than others.

When my blog recently celebrated its 4 year anniversary, I wanted to do more to celebrate the occasion but I didn’t have the time or energy to implement any of my ideas. I made peace with this and wrote a simple post that day. I was just thankful to have managed to get it posted on the right day, to be totally honest. I decided it wasn’t worth stressing over and just did the best I could.

Lately, I’ve been looking for the light at the end of the tunnel, so to speak.

All I know for certain is that I miss my old routine and my former schedule for writing here and I would like to “get back to normal”… whatever “normal” is. Will I keep the pace I had before? Not likely. However, I would like to gradually increase the amount of writing I’m doing here. Thank you, from the bottom of my heart, for sticking with me here – despite my infrequent blog posts lately.

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).

June 12, 2012   2 Comments

Four Years: Learning, Growing, Sharing, Caring

A year ago today, I wrote Three Wonderful Years! to try to begin to convey how truly amazing the blogging journey has been for me.

At that time, I was having difficulty finding as much time to be online and to be writing as I had become accustomed to and I wrote that post as a brief summary. Little did I know then that I’d feel even more pressed for time now than I did then. I have no shortage of ideas to write about but due to a whole host of factors happening offline, I really can’t do justice to a decent summary now. Therefore, I will just take a moment to acknowledge that today is the four year anniversary of when I began writing a blog. It has been a rewarding experience in many ways. The mutual support for patients with a variety of chronic illnesses, the exchange of information, and the crucial feelings of validation patients give one another are so important, so needed, and so appreciated by so many people.

As much as I wish I could write more now, I have the comfort of knowing that the people who read my blog understand. I don’t have to explain how sick and busy I am because it’s understood by those who are reading it. So, I’d just like to close by thanking all of you. The chronic illness community is a wonderful place filled with people who care deeply about others and who generously share their time and knowledge with others. I am honored to be part of this very special community.

Last but certainly not least, the topic of suicide prevention has become an important one here on Chronic Healing and I would be remiss to leave out a mention of this. Every single day, this blog receives traffic from people who have searched online for information about suicide prevention and related topics. If you or someone you know is having thoughts of suicide, please make use of the abundance of trained suicide first aid personnel who are available at hotlines around the world. Please click here for more information on how to find such resources in your area. Help is available. The more I write about this topic, the more people find my blog when they search online for info. The more people find my blog while searching on this, the clearer it becomes to me that this is an epidemic. Please encourage anyone you know of who might be helped by such resources to make use of them. The trained staff at these hotlines are there to help.

Thank you, everyone, for making the last four years so special. I can’t begin to express my gratitude for having had the opportunity to get to know so many amazing, thoughtful people who care so very much about their fellow patients!

Here is to the beginning of year five in the blogging world!

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).

June 2, 2012   6 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

    Endometriosis And Sunscreen

    Spring is in the air! It’s that time of year (in my part of the world, anyway) where people tend to spend more time outdoors.

    Since it’s Endometriosis Awareness Month, I wanted to highlight some new research that I think is worth noting. Today I received an email that referred to a study about sunscreen and endometriosis:

    Chemical & Engineering News: Sunscreen Compound Linked To Endometriosis

    Here is a link with more information:

    Urinary Concentrations of Benzophenone-type UV Filters in US Women and Their Association with Endometriosis

    The link above is for the abstract only. I don’t have the ability to access the full article. However, the abstract says:

    “exposure to elevated 2,4OH-BP levels may be associated with endometriosis”

    Given that this chemical affects estrogenic activity, it’s helpful to know about this new research (and the fact that the researchers speculate that 2,4OH-BP may be associated with endometriosis).

    For those who are not aware, endometriosis has been associated with an increased risk for developing melanoma:

    Personal history of endometriosis and risk of cutaneous melanoma in a large prospective cohort of French women

    If you’re looking for a place to learn about sunscreens, you may want to try this site:

    Environmental Working Group’s Skin Deep® Cosmetics Database

    To be clear, I’m not here to provide anyone with sunscreen advice. I myself have very fair skin that burns very easily (no matter how carefully I dress or try to avoid mid-day sun) and I’m not really thrilled with the limited options available. (See “Sunscreens Exposed: 9 surprising truths”). It’s interesting to me that Europe apparently has superior options available for sunscreen due to FDA delays in approving ingredients already used there.

    Since I have multiple chemical sensitivity, I sometimes have reactions to other people’s sunscreen – especially since the spray sunscreens came onto the market. Some of those sprays make me so sick! Last summer, we were at the beach and someone about 40 feet away from me sprayed it. The wind carried it right over to me and I didn’t need the sunscreen database to tell me that there were some nasty chemicals in it!

    Hopefully, this sunscreen guide will help people make informed decisions.

    It’s always helpful to be able to make informed purchasing decisions… especially with regard to products that can impact one’s health.

    When I’m going to be outside for any length of time in the sun, I try to wear long sleeves if possible. (I’m famous for stealing my husband’s old dress shirts for this purpose). I make sure to wear a hat and sunglasses too. There are definitely times I feel the need to wear sunscreen. For those times, I use the sunscreen database to find a mineral-type product and I avoid sunscreens that have endocrine-disrupting chemicals in them. I seek out shade when at all possible. (This is helpful for dealing with the heat intolerance and syncope issues I struggle with in warmer weather as well).

    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).

    March 22, 2012   2 Comments

    Facing Endometriosis Awareness Month With Uncertainty…

    In many ways, my life – as I knew it – got shattered, for lack of a better term, this past January. My days and nights are now filled with managing a very complex crisis that: sucks my energy, causes immense stress, threatens to take me off track with managing my illnesses, results in emotional upset, has all but isolated me from my many wonderful online friends, and far more.

    I have had to carefully walk a very fine line (to avoid burnout and significant exacerbation of symptoms). Making time for basics like sleeping and eating has become challenging at times. It’s exhausting and I look forward to a time when things will return to a sense of normalcy… even if it’s the sort of “new normal” that we in chronic illness circles often talk about. (In other words, I don’t think I’ll ever be the same after the events of recent weeks). I do want some peace and real rest. The reality is that I can’t see this on the horizon anytime in the near future. So I have to pace myself accordingly.

    Some of the circumstances I’ve learned of and/or been directly working on have been truly heartbreaking. I have really had to draw on everything I have learned over a period of decades. All of the energy I normally channel into this blog (and time normally spent networking with my fellow patients online) has been funneled into working on this offline crisis.

    Today begins Endometriosis Awareness Month. If you have been a regular reader of my blog for awhile, you know that March is normally a very busy time for me because of it. I honestly don’t know whether I will be able to blog for Endometriosis Awareness Month this year. That remains to be seen. To be honest, it’s not looking very promising. Time will tell. In the meantime, I just wanted to take a moment to check in here. I miss talking with you all! I wish I knew when I will get back to a more regular schedule for updating this blog. The reality is that I simply don’t know.


    Thirty years ago, my endometriosis symptoms began. Twenty years ago this month, I finally got diagnosed with endometriosis via an outpatient surgery called laparoscopy. After living with endometriosis symptoms (undiagnosed) for 10 years, I was finally diagnosed on March 17, 1992. It may sound strange but I was actually relieved when I finally got the diagnosis in 1992… because I finally had a name for what was happening to my body, I had validation that it was a real medical condition (i.e. I wasn’t exaggerating, “being dramatic”, or “being a wimp” as various people had implied or came out and said to me over the years). My illness was real (as I had known all along). The symptoms that had so often made my life a living hell in the preceding 10 years were attributable to a real medical condition. A condition that has treatment options (however inadequate they may be). A condition I now know I share with millions of women and girls the world over. Obviously, I would prefer that endometriosis be banished from the planet and I wish that no one ever again would have to suffer its effects. It was comforting, though, to meet other women (via in-person support groups first and then online) who “get it”.

    While I will do everything I possibly can to participate in Endometriosis Awareness Month, I know I won’t have the stamina for it this year that I have in previous years. So, I would like to encourage anyone who is reading this to please check out the many posts I’ve written previously on endometriosis. If you haven’t already signed the above petition, please consider doing so. If you have signed it, please share it… especially on Facebook and Twitter. Anyone who wishes to sign it can do so. We recently topped 1,000 signatures. Let’s keep that momentum going. Let’s get the word about about endometriosis!

    It is a serious illness that is often marginalized. Patients deserve to be taken seriously. They deserve to be given factual information rather than misinformation. Doctors who dole out misinformation need to be called out on it. Patients dissatisfied with their treating physicians need to seek second (or 3rd or 4th…) opinions. Not happy with your doctor’s handling of your symptoms? Why not do the research to find the best doctor in your area and switch over? Patients deserve to be treated with respect and dignity. Patients deserve doctors who are honest and ethical.

    So, if you aren’t happy with the treatment you’re getting… ask around. Network with other women. Determine who might better suit your needs. Rather than reward unethical or uninformed physicians with your health care dollars (and that includes payments made to doctors by insurance companies… not just your out of pocket costs!), take your business elsewhere if you are not satisfied. We each only get one body in this life. It took me some time in my own case to figure out how to best advocate for myself. In time, however, I learned not to waste my time, energy and well-being being treated by doctors who are not a good match for my needs. Doing your “homework” and advocating for yourself are so important!

    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).

    March 1, 2012   3 Comments

    Taking A Break From Taking A “Break”

    It’s a word that can have many different connotations:


    A break can be a pleasant, restful time. It can be a time to re-connect with friends and loved ones, to re-energize, and to heal.

    On the other hand, the word “break” can have far lest restful meanings. Confronting a significant challenge can make you feel as if you might “break”. Something upsetting or troubling can “break” your heart. Someone can “break” a promise or fail to meet an obligation or responsibility. Someone can “break” your trust. Bad news can “break”. Someone can do something that possibly even “breaks” the law which puts people in danger.

    From the time that I started writing a blog in June 2008, I have never taken an entire month’s “break”… until now. It wasn’t a planned “break”. I don’t know when I will be able to get “back to normal”. I haven’t even felt I had the luxury of writing a quick update before now because I have been focusing my energy on a complex, maddening problem that has made it difficult for me to remember all that I know about the importance of self-care. Finding the time to eat and sleep properly has been difficult. I have had to force myself to do so. Sometimes in life, things crop up that we didn’t count on, want, or predict.

    So, I wanted to take just a moment today to say that I haven’t forgotten about this blog. I haven’t abandoned it. Recently, I have just been focusing my energy on other things. How long I will continue to feel the need to do that remains to be seen. I will try to post some sort of brief updates like this when I am able. I’m not sure how often that will be or when things will calm down. I’m not sure when I will truly get to take a break from my “break”. It doesn’t look like I will be able to elaborate much further about what has taken my attention offline. This is for a multitude of reasons. All I can really say is that it may keep taking my attention for some time to come. I wish I could better explain things but I don’t really see how I can.

    For those whose blog comments have gotten held up in moderation or to whom I didn’t reply promptly (especially those who are new to this blog and unaware that this is not how I usually do things), I’m sorry for the delay. Please do keep your blog comments coming and I will post them as I am able. I may have to skip individualized replies to them (at least in some cases), depending on the content of them and how I’m doing on time. I apologize for this disruption in how things are normally done but I am all-too-aware that I only have so much energy to spend and just about all of it is going offline at this time.

    Last but not least, I wanted to mention that the endometriosis awareness petition is just two signatures shy of 1,000 now! For those of you who are not aware, anyone can sign this petition in support of the millions of women and girls (like me) who have endometriosis. One does not need to be an endometriosis patient to sign it. So, please share the link to it (above) on Facebook and Twitter and let’s see how quickly we can surpass 1,000 signatures in support of endometriosis awareness! Thank you!


    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).

    February 9, 2012   3 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

    Happy 2012 New Year!

    Happy, “as-healthy-as-possible” New Year!

    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 31, 2011   4 Comments