Helping women with chronic illnesses
ChronicHealing.com

Endometriosis Blog: ***TODAY*** Kicks Off National Invisible Chronic Illness Awareness Week 2008!!

Today kicks off National Invisible Chronic Illness Awareness Week 2008!

I dialed in today and chatted with Christine Miserandino and Lisa Copen. What a pleasure it was to talk with these two women… who had some great insights and thought-provoking comments!

Christine (aka “The Spoon Lady”) wrote “The Spoon Theory”. See it on her website:

http://www.butyoudontlooksick.com/

Lisa is the Executive Director of Rest Ministries, Inc. It’s my understanding from what I’ve read on http://www.invisibleillness.com that she is responsible for creating National Invisible Chronic Illness Week.

I dialed in (see the http://www.invisibleillness.com site for how to dial into the seminars). They took my call and we discussed numerous things. We kept things very positive… to the extent that we actually discussed ways in which illnesses can be a blessing and can help us to be more focused, appreciate the little things more, and “take things in” in a way that we might not otherwise!

Please see yesterday’s related post:

Sunday, September 7, 2008 Endometriosis Blog: Tomorrow is DAY ONE of National Invisible Chronic Illness Awareness Week 2008!!

Yesterday’s post includes an excellent video clip in the post that I HIGHLY recommend!!

There is just so much going on in conjunction with this chronic illness awareness week that the best thing I can suggest is to just visit the website below and explore it yourself.

***** It is just loaded with information! *****

http://www.invisibleillness.com

This article was posted by Jeanne via “Jeanne’s Endo Blog” at www.endendoat.blogspot.com.

This post was written by Jeanne at http://chronichealing.com. Copyright Β© Jeanne β€” chronichealing.com. 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).

Reading: Endometriosis Blog: ***TODAY*** Kicks Off National Invisible Chronic Illness Awareness Week 2008!!

4 comments

1 Shauna { 09.12.08 at 1:31 am }

Jeanne,

This is an excellent post!! So much information for those of us in Chronic Pain/ Hidden Illnesses, and those that live with them, or just those that want to LEARN more!! THAT is what we all want, yes? For others to understand us, to look at us as exactly what we say we feel. Even though they can't see it!!

About to write a Blog post on this wonderful week too!!

Sorry to be so 'gone', but just so much going on in my life, need to write you hun. πŸ™‚ Gentle Hugs, (btw did you get the either email or comment about my sis in law who has suffered from Endo since a young girl. Totally sounds like your story!!

I wanted to mention that Lisa Copen is a very special woman to me Jeanne. In 2004, I was involved in her work in the Christian Hopekeepers Groups, and was working on starting one in my church at the time. Lisa is so supportive, and I admire her greatly. I have had many conversations with her and enjoy every one. She is a very uplifting lady!!

Much Love to you…a wonderful woman!!
Shauna <3

2 Jeanne { 09.12.08 at 2:52 am }

Shauna,

Thank you!! It is amazing, isn’t it, how very much information there is available (in general, on the Internet as a whole, through this awesome awareness week, etc.)?

I am going through a phase where I just feel like I’m just drowning in information… if that makes any sense. My eyes just can’t read fast enough… Do you know what I mean?

Yes… I agree. I believe that is what people want — to LEARN more.

I think we all want to be understood, validated, and believed!!

Goodness knows that just because an illness isn’t visible does not make it any easier on the patient!

Good luck with your blog post… Your posts are always amazing so I look forward to reading it.

Hey everyone… Shauna’s blog is at:

http://shaunaslifeinpain.blogspot.com/

I am really into shameless plugs this week. πŸ™‚

Please don't apologize. We all have those times where it's very hard just to do daily functioning let alone keep juggling all of the balls up in the air. I know you have a *LOT* going on from reading your blog.

I'm sending hugs your way too. πŸ™‚

You had mentioned someone who has endo but I thought it was a close friend. I don't remember it being your sister-in-law. Do you have a friend AND a sister-in-law with endo or am I remembering wrong??

It's sad how common these endometriosis "horror stories" are. You'd be amazed how many women have very similar experiences…

You are several steps ahead of me… I never heard of Lisa Copen OR of National Invisible Chronic Illness Awareness Week until quite recently.

Once I heard about it coming up and started reading up on it, I was blown away by the sheer volume of information and the high quality of information available through the annual awareness week.

In the brief interaction I had with Lisa on the seminar/call this week, I could tell she is a special lady! She has such a positive and hopeful attitude.

I subsequently called in on a 2nd seminar later in the week and she was on part of that call as well. (She had an unexpected doctor appointment and her husband dialed in for the first part of the call on her behalf and then she dialed in part way through the call).

She was funny because she used it as an opportunity to let listeners know that she and others on the seminar calls are chronically ill too… and that it might seem like they are 'doing OK' but that they have their own health issues as well.

She handled the whole thing with humor and grace and it really was helpful to be reminded that the people who are running this whole amazing awareness week are chronically ill themselves.

I could tell she is really nice just in the brief time I heard her on the two calls (and from what I've learned in the last few weeks about her). I'm glad she was so helpful to you.

She must be a real dynamo to spearhead such a comprehensive & informative awareness week!!!

I'm sending positive energy and love your way too… and YOU ought to know all about what it is to be a wonderful woman from your own personal experience!! πŸ™‚

Jeanne

P.S. At first I thought it said "less than 3" after your name but then I looked at it again and it looks like a sideways heart symbol. Is that what it is? Did you invent that or am I old and out of it? Is that one of those emoticon symbols that I should know? πŸ™‚ It does look like a heart the more I look at it. You are too funny! πŸ™‚

3 Shauna { 09.15.08 at 6:45 am }

Awwwwwwww sweet Jeanne,

First, the heart. I had never seen that before, it was my 18 yr. old niece that uses it. But hers looks like a better heart. Must be the font. Yep, sideways heart. <3 Less than 3. LOL You INTELLECTUAL!! πŸ˜‰

The best friend and sis in law, one in the same. You have a great memory! I have found myself so foggy lately during this Peri-Menopause/Menopause (long story, email ya that one), it is killin me girl!! I'm posting about that soon so you may be interested in it. How does Endo react to PeriM, and Menopause? Increased pain?

Yes, Lisa is a very special person. She is one that is honest and has told the group over at Rest Ministires that she runs, if she is tired and needs some self-care, or will write in the Hopekeepers Magazine she publishes every other month, that she just has not had the ability to complete certain things she really wanted to do. I like that about her and the people over at Rest Ministries. Great group of mainly women.

I, too, can't even get to my bank site to take care of business, b/c I get lost in all the Blogs, the link to link to link….but by doing that, I just ran into a brand new Blog written by a male travel nurse. Since that is what I have decided to try, I will be one of his early faithful readers. Already has given me great info. (Oh, NO! Not MORE information!) Hey, maybe THAT is why my brain feels foggy!! πŸ˜‰

Much love to a very special lady…((and always gentle hugs))
May you have a low or no pain day my fast friend….

Shauna

Hey, promote me shamelessly anywhere hun!! hehe

4 Jeanne { 09.15.08 at 4:30 pm }

Shauna,

The heart was cute. I thought that was what it was. Sometimes I feel old when kids come up with this stuff! πŸ™‚

Has your friend/sister-in-law seen my blog? I’ll bet she could provide some great insights. Maybe you can influence her to read it and see if anything on it gives her the urge to post comments.

Often on the blog (and in my local support group) we hear from the people who are really struggling and sick.

We don’t hear as often the “success stories” from those who are doing better than before. It sounds like maybe your friend is doing a bit better with her endometriosis than in years past??

If so, she may be able to provide some helpful input for those who are less fortunate. Having more experienced patients support less experienced patients is so important!

I’m sorry you are struggling. Yes, I’ll be interested to read your post. I’m no medical expert but let’s just say that I have certainly heard some extraordinary (in the “not so good” way) stories from women I know who have endometriosis and have also gone through (or are going through) perimenopause or menopause.

I won’t play doctor but I’ll just say that I think endo patients have some unique reactions to life events that affect their hormones. I’ll put it that way…

I’m so glad Lisa was able to give you help/support. Yes, I noticed she’s refreshingly honest about her own limitations.

It was interesting when she joined the seminar call part way through last week (due to a doc appt) and she just explained matter-of-factly that this was why she missed the beginning of the call.

It’s always important to remember that organization leaders like Lisa, support group leaders and such have illnesses of their own and have their own challenging times/symptoms to deal with.

I like it when people just “say it like it is” that way. It makes others feel less alone, less isolated, and less “different” when they realize there are others out there struggling just like them.

Yes, blogging can be quite consuming! There is a tricky balance between healthy, cathartic writing and getting sucked into spending too much time blogging and not tending to other important things in the process.

THERE ARE JUST NEVER ENOUGH HOURS IN THE DAY!

I’m glad you found that helpful blogger, though, and I hope that it can help you with your career. DId you listen to any of the seminars from last week?

There was one that was career-related that you might find interesting. I listened to it (live) and I can find the name of it if you missed it and want to hear it. You might really find it interesting.

Yes, it’s easy to have “information overload” when blogging or spending much time on the Internet. There is just SO much information!! It’s hard to keep up with it all!

I’m sending you love and positive energy as well! I wish you the same… minimal or no pain. I wish you serenity and peace of mind too! πŸ™‚

Jeanne

P.S. Feel free to shamelessly plug my blog anytime you want to as well, my dear!! πŸ™‚

Leave a Comment

CommentLuv badge