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4/15/2009

You Only Get One Body!

You only get one body. I tell people this all the time when I'm worried about them overdoing or rushing recoveries. I'm trying to take my own advice...

I'm tired. After posting up to 5 times/day during March for Endometriosis Awareness Month, I am tired.

Then, I had the April 3rd colonoscopy (see previous post) and that wiped me out even more.

For whatever reason, I've lost 34 pounds without trying in about 4 months. I need to chill out. I need to listen to my body.

So, I haven't been posting much lately. I am trying to practice what I preach and implement the self-care I always talk about.

Some of you have seen me pop up on twitter, Facebook, etc. However, I have been way "quieter" than usual. Great progress has been made on the new blog (to replace this one) and I look forward to the launch (no date set just yet).

There will be blog giveaway prizes. So stay tuned!

I'm going to go conserve my energy now. There are many previous posts that may interest you if you're reading this.

You can:

1) Browse through randomly...
2) Look through my archives (see sidebar)...
3) Do a search of my blog using the search box (top left corner of blog, enter search term and click search... hitting enter won't work).

Happy reading!

P.S. We are still gathering names for the endometriosis awareness petition! See top of blog for link (too tired to make link)!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

12 comments:

Parenthood For Me said...

Hi Jeanne-
Thank you for visitng my blog and reading and commenting. It's funny some posts come together so well. I have thought about that tricyle so many times in so many different ways. I just never thought to write about it. I am currently writing a book about our journey to parenthood and I am trying very hard to break into the freeland world. Any advice? I am trying to get the post you read published (modified a bit).

My Endo Journey said...

Thinking about you!!!!!

Jeanne said...

My Endo Journey,

Thank you!!!

I wish I were resting the way it looks like I am from my lack of blog posts recently (and wish I had been resting the way I should be).

Unfortunately, there has been a lot going on behind the scenes on the endo front in the last few days that is draining my energy. I need to chill because today was stressful.

I tried backing off on things but some issues have cropped up that have kind of "sucked me in".

Honestly, I need to work harder at resting because I pushed myself too hard today and I'm feeling it now.

So, thank you! You gave me the reminder I needed that I only get one body.

Jeanne

kate-isgreat said...

hi jeanne,
thanks you for all the kind thoughts and positive energy! i check and the raspberry tea is the traditional medicines one, nothing about endo on the box, just says uterine tonic. think i got mixed up because my mom had told me she read something about it and endo :) i saw the demi tweets and i think thats awesome that its able to reach a huge "audience" like that. take care :) -kate

Jeanne said...

kate-isgreat,

I like your screen name! Happy to see you here too and not just in twitter-land!

Happy that you were able to check out the raspberry tea label. :)

Yes, it was a neat opportunity to respond to Demi Moore's acupuncture tweet (complete with a TwitPic showing the needles in her back)... simply because she has so many followers.

Even if sending her a request to retweet the endo awareness petition goes unanswered, her hundreds of thousands of followers still see it! :)

Demi Moore is @mrskutcher on twitter and the acu tweet she posted that started all this was spotted by @missmotorcade (an endo patient who loves acupuncture)! So that's pretty cool.

So glad to see you here and hope to see much more of you!

:)

Jeanne
xo

Rebecca said...

Jeanne:
My good friend "Rhymes with Migrane" sent me the information you provided to her before my laparoscopy. It was so good to talk to her that night about a month ago. She's been an amazing friend in many ways but definitely in introducing me to an online community of people who have problems like mine. Since my laparoscopy they have pushed further with my endocrine problems, the abdominal adhesions they found and cannot explain, my vulvovaginal pain disorders and possible vulvadynia and some nerve damage caused by the surgery. I'mt rying to keep my head up and look forward to becoming better acquainted with this website (I've never participated in a blog before). I just wanted to thank you for the good thoughts and advice you sent out on my behalf. For those of us living with these things we find so little comfort in our day to day life (a coworker said maybe all I really need is a happy pill the other day) that it's nice to turn to something that helps when you feel like you're at the end of the rope.

Thanks again.

Yaya said...

Don't know how I missed this post but I know you have not been feeling well, and on top of it all there are still so many battles to be fought in the endo arena. Please re read this post and remind yourself to slow down, for your body's sake!

Jeanne said...

Welcome Rebecca!!

So glad MJ sent you over here! When I had seen her blog post about a friend having trouble, I posted info in the hope it might help.

It's amazing how many people are going through similar experiences (the Internet is so amazing at finding connections) and often I have found the most supportive people are those who have firsthand experiences and can truly relate.

Just trying to better understand your situation for the purpose of providing support (not trying to be nosey!)

Did they indicate whether they did or didn't see endometriosis? Have you had previous surgeries that could have caused the adhesions they saw? Are you aware that endometriosis itself can cause adhesions? Is the doctor who performed your laparoscopy experienced with recognizing endometriosis?

Sorry to ask so many questions! I'm just trying to help you sort through the confusion.

I have vulvodynia/vestibulitis myself. So I understand about that.

Do you have a pelvic pain specialist trained in treating it?

You have nerve damage caused by the surgery you just had??

I had a last resort nerve-cutting surgery in January 2008 (after off the charts pain for 4 years) and it didn't go as planned (meaning I was in WORSE pain afterwards)!

Long story short, it resulted in phantom pain. (The same phantom pain that can occur in amputees can also occur following nerve-cutting surgery like what I had done).

In any event, the phantom pain was the worst pain I have ever felt in my entire life. It scared me!! I've had 11 kidney stones, a very complicated, painful childbirth, 2 nerve blocks while awake which required injecting a needle with anesthetic into my pelvic area, endo pain that has caused me to actually black out, etc.

However, the phantom pain was scarier than any of them.

Nerve pain can be so brutal.

Anyhow, I mention this to let you know that my acupuncturist was the only one who was able to give me any relief!

I have permanent damage, according to the special neurologist.

However, it is much better than it was thanks to acupuncture. What a world of difference!

Be sure to check out my videos that talk about acupuncture and my blog info on acupuncture too. It might be something that can help you! :)

It sounds like you have a positive attitude and that's HUGE. Good for you. That helps a great deal. :)

I'm honored that you've checked out my blog as your first blog. I remember when I first participated in a blog and it was all unknown to me. It wasn't long before it felt very comfortable jumping in and commenting and hearing the replies people made.

I'm glad you found my suggestions helpful. :) I try not to to call what I say "advice" because I like to look at it as "suggestions".

This may sound nitpicky but I took a class back in 2001 on facilitating self-help groups in preparation for starting a local support group and they drilled into our heads to use the word "suggestion" rather than "advice".

I began participating in endometriosis support groups in 1992 when I was diagnosed.

So, for 17 years I have been listening to women's stories and what you've described is SO common (difficulty finding needed comfort, silly/insulting comments from co-workers, etc).

It is nice to have safe places to go when we reach that "end of the rope" feeling.

Hopefully this blog can be one of those places for you. I wish you the best.

It sounds like we probably have plenty to talk about. So don't be shy stopping back here. Also, I'll be replacing this blog with a new blog soon. So keep your eyes peeled. I'll be having blog giveaways (yay... prizes). So stay tuned. :)

Thanks for stopping! I look forward to hearing from you again.

Jeanne

Jeanne said...

Alicia,

What do you think? Am I a little bit behind?

Holy cow. I just found this comment. Clearly I am inadvertently handling comments out of order. Sorry about that!

Well, I'm trying to practice what I preach. Today, for example, I went back to bed and slept for hours because my body was screaming, "I need sleep".

So I listened. Now, I'm not going to lie to you. I'm not always as successful as that at listening to my body and acting accordingly... (and, yes, there has been a great deal going on in the endometriosis arena and that's not helping me to chill out).

I'm trying to find that "balance". It's not always easy.

Thank you for your concern.

Jeanne

endogirlie said...

I've just started blogging, I'm still trying to figure it all out. I have stage 4 endo and have had surgery, many different meds and with that many a fight with health insurance companies.......With the Obama administration in place and seeing all the changes that it has been making I can only wonder how they will approach and change the health care policies that are current, as changing the health care system was a large and one of the main issues during the campaign. As a 26 year old woman who was diagnosed with stage IV endometriosis in 2006, I know the struggles of dealing with the current health system. Having a reproductive disease that, although it affects more than 5 million women in North America alone, it is still something that is unknown and that affects the way it is viewed by physicians, employers and health insurance companies. This disease is non- discriminatory and is something that women of all ethnic, religious and socio-economic backgrounds are dealing with on a daily basis and still we are all facing discrimination, preconceived notions and general ignorance regarding treatment for our disease. It is for these reasons that I am hoping the new administration will hold true to their promise of reforming health care laws and policies while making it affordable for all people.

Jeanne said...

endogirlie,

Welcome to my blog... and to blogging! I popped over to your blog earlier today and saw that you had posted the link to the endometriosis awareness petitition I started. Thanks!

If you get a twitter account, be sure to let me know your twitter name. I'm @jeanneendo on twitter. We promote the petition quite a bit on twitter (among other endometriosis things).

Like you, I was diagnosed with endo at age 23. In my case, I had symptoms for 10 years before diagnosis. That time lag is sadly typical of endo. (Endo diagnosis occurs 9.9 years after onset of symptoms... on average).

Lord only knows I have plenty of experience fighting with health insuarnce companies. I'm 40. So I've been battling them for a long time. As far as the future is concerned regarding health care reform, the issues are massive and complex.

That does not mean I'm into gloom & doom or hopelessness. The reality is that health care reform in this country is extraordinarily complex because of the various special interest groups involved and how powerful they are.

Clearly the health care system needs improvement.

I have a tendency to bend over backwards not to get into politics on my blog (simply because I could easily veer off of writing a health blog and that's not my goal with this blog).

However, I will simply say that I believe the promises made were sincere, that the goal of improving the health care system is true, and that improvements can be made. Will the improvements be enough to satisfy everyone? I'm honestly not sure that's possible. Well, I know it's not because "you can't please everyone".

I think we will have to be patient and see what happens. There are so many high priority issues being addressed simultaneously.

There is a whole philosophical debate regarding whether basic health care is a right or a privilege. I personally believe health care is a basic human right and that no one should be denied medical care due to their income level. Not everyone agrees but that's my belief.

You are correct that endo affects all ethnic, religious and socio-economic backgrounds. It's also true that we face discrimination, preconceived notions and general ignorance regarding treatment for our disease.

I think we can hope for the best and give people a chance to implement the badly-needed reforms.

Jeanne

Jeanne said...

Parenthood For Me,

I apologize for the long delay in posting your comment! I really enjoyed your story and I think it's great that you're writing a book about your journey to parenthood.

I have some ideas that I think might be helpful. It's kind of complicated to get into in a blog comment so I am going to try to reach you directly.

Bear with me as I am in the home stretch for getting this blog converted into a new blog and things are very pressured right now. I will try to get a hold of you directly.

Jeanne

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