Helping women with chronic illnesses

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National Infertility Awareness Week 2012

It is National Infertility Awareness Week (NIAW). Often, when we read about infertility online we hear about the struggle of those who are actively trying to conceive… or perhaps about life after a struggle with infertility that includes children. However, there are many others whose stories with regard to infertility may not be heard quite as often. I believe it’s important for the voices of those who are childfree-not-by-choice to be heard as well.


Please take a moment to check out what Lisa wrote here called:


It’s important to increase awareness of the many ways in which infertility impacts men and women. I appreciate Lisa sharing her perspective on her blog and wanted to share it with my readers.


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


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April 25, 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 http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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    RT @jeanneendo: "Exhaustion: Five Tips For Coping"
  • 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 http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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    RT @jeanneendo: "Getting Back In The Saddle"

    April 16, 2012   2 Comments

    Endometriosis Awareness Month: Reflection Time

    As I have written previously, I have not been able to do the sort of endometriosis advocacy work I normally do this time of year – for Endometriosis Awareness Month – due to an offline situation that has been largely keeping me from my normal activities. However, I did want to take a moment, as Endometriosis Awareness Month winds down, to reflect back on things.


    On March 17, 1992 I had a laparoscopy and was finally diagnosed with endometriosis. My symptoms began in 1982 when I was 13 years old. It’s hard to believe that I have been living with endometriosis for 30 years now. As you might imagine, I feel especially ancient when I read blogs of endometriosis patients who are under 30. Just kidding! I’m really not one to get hung up on age.


    On a more serious note… The first 10 years that I lived with endometriosis were often frustrating, stressful, confusing, and very painful. I knew something was wrong because surely nothing that causes that kind of pain could possibly be normal! However, I was too young to know how to advocate for myself or properly articulate just how much pain I was in. I pushed myself very hard and taught myself various coping mechanisms and ways of dealing with the twists and turns that the as-yet-undiagnosed endometriosis threw my way. Somehow I managed to get straight As in school. I stayed out of trouble. The number of people who had a decent understanding of just how much pain I was living with was fairly limited. Essentially, I muddled through and it was very difficult.

    Once I was diagnosed with endometriosis in 1992, I finally had a name for what had been going on for all those years. I had validation that I really did have a real medical condition. Some of the insensitive remarks I’d heard over the years (i.e. “just grin and bear it”) began to roll off my back more easily. I had known all along that I was sick. Now, however, I had a name for it. This empowered me to find other patients like me (via a local endometriosis support group). This was a massive source of support for me. Finally I knew people who understood!


    I began to make trips to the university medical library to read articles about endometriosis in medical journals. Go ahead. Call me a dinosaur. You see, I couldn’t just look endometriosis up on the Internet back then. Not an option! (Yes, kiddos… there was life before the Internet. I was there. I remember). My local library had NOTHING about endometriosis. I had asked a librarian to help me find information about endometriosis in 1992. There was literally NOTHING in the entire (public) library. So, I began to spend enormous amounts of time at the medical library devouring anything I could find on endometriosis.

    To make a long story short, after the decade I’d spent struggling in pain with no answers as to WHY… I now knew the reason and had options for pursuing appropriate information and support. This was an important milestone for me. The diagnosis certainly didn’t offer me a cure (as there is no cure for endometriosis). However, it was a gateway to information and support beyond my wildest dreams.

    When I got married and moved to a different community, I started an endometriosis support group. I had been attending monthly meetings in the two cities I had lived in between 1992 and 2001. From 2001 through 2008, I was a support group leader in my area. Starting a support group from scratch was a lot of work but it was a labor of love and I got to meet many women like me.

    In 2008, I began writing a blog. Since then, I have primarily focused my time for endometriosis-related work online. If you’re a regular reader here, you know I write about other topics too… but, in many ways, endometriosis was the topic that really drove me to begin writing a blog in the first place.

    As Endometriosis Awareness Month draws to a close, I just wanted to thank each and every one of the wonderful people I have met online for your support, encouragement, and kindness. While I am sad that I didn’t get to do all of the things I wanted to this month, I keep reminding myself that endometriosis awareness is a year-round effort. I may not have accomplished what I had wished within the month of March but there will be time in the future to continue the advocacy work.

    GoPetition


    Finally, for those of you wondering about the endometriosis awareness petition, I absolutely have not forgotten about it. When the offline crisis I am managing calms down, I am looking forward to using that petition for the cause. If anyone has any examples of media coverage on endometriosis that contains misinformation, myths, or confusing wordings… please let me know. You can post the links in comments to this post. Don’t worry. I won’t publish those comments. (All that will do is give more air time to the misinformation). However, if you post the links in blog comments to this post, I will see it and it will come in handy going forward once I am able to tackle that project. So, please keep signing and sharing that petition link as widely as possible. We’ll be putting it to good use in the future. Thank you!

    P.S. If you haven’t already, please browse through my previous posts about endometriosis. If you are new to this blog, I have been writing about endometriosis for 4 years now. So, you might find something elsewhere on this blog that is helpful to you. Please take a moment to look around. You may meet other endometriosis patients by browsing through blog comments as well.


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


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    RT @jeanneendo: "Endometriosis Awareness Month: Reflection Time"

    March 30, 2012   4 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 http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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

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    RT @jeanneendo: "Endometriosis And Sunscreen"

    March 22, 2012   2 Comments

    MUC Gene Research: Endometriosis And Infertility

    If you’re looking for some light reading, the research listed below is not it. If you’re interested in reading thought-provoking, detailed information regarding research on endometriosis and endometriosis-related infertility, this is an interesting read. For those of you who are not signed up for Google alerts on the topic of endometriosis, you may wish to consider signing up for them.


    Today, I received an email alerting me to the newer study below. The notification led me to a site with which I wasn’t particularly impressed. As is so often the case, though, with such alerts that notify me of a site talking about a research study, I found the notification helpful in the aspect that it told me of the study so that I could then go look for the actual research itself (rather than someone’s interpretation of it). I won’t give my own interpretation of this research. Instead, I’ll include the links here for those who wish to read it themselves:



    (After clicking the above link, just click “provisional PDF” – at the bottom of the abstract – to see the complete article).


    It’s always refreshing to me to see meaningful endometriosis research. With so many endometriosis patients impacted by infertility, I found this research to be a breath of fresh air.


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


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

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    RT @jeanneendo: "MUC Gene Research: Endometriosis And Infertility"

    March 15, 2012   2 Comments

    “Life Is What Happens To You While You’re Busy Making Other Plans”

    “Life is what happens to you while you’re busy making other plans”
    ~~~ John Lennon


    GoPetition


    As I anticipated at the beginning of the month, I have not been able to engage in the Endometriosis Awareness Month activities I normally do in March. The offline situation I have mentioned previously is continuing to make it difficult to focus on much of anything else. On a brighter note, I see that the blog traffic here has been quite heavy! I am happy to see that the Endometriosis Awareness Month posts I’ve written in past years are getting plenty of visitors. This makes me feel slightly better about the fact that I am not doing what I had planned this March. “Life is happening” offline that has foiled my plans for March. If you haven’t done so already, please sign the above petition and share the link on Facebook and Twitter.

    Thank you!


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


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

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    RT @jeanneendo: "“Life Is What Happens To You While You’re Busy Making Other Plans”"

    March 10, 2012   No 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.

    GoPetition


    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 http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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

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    RT @jeanneendo: "Facing Endometriosis Awareness Month With Uncertainty…"

    March 1, 2012   3 Comments

    Taking A Break From Taking A “Break”

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

    BREAK


    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!

    GoPetition



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


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

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    RT @jeanneendo: "Taking A Break From Taking A “Break”"

    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 http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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

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    RT @jeanneendo: "Sleep, Sleep, Sleep…"

    January 10, 2012   4 Comments