CFIDS Hope

I'm Back - & www.CfidsHope.com is Live, too (at last)!

noreply@blogger.com (Ann Corcoran) — Sun, 02 Sep 2007 02:54:00 +0000

Wow.... the last time I wrote was LAST September. A whole year ago....

To cut to the chase - I had a health challenge and I stopped everything except what I absolutely had to.

So, after a year’s hiatus, I am happy to announce that I am once again healthy -- and thriving, in fact.

My e-book had the World's Quietest Launch - - none. Well, the http://www.cfidshope.com/ went live - but I was in no shape to promote the site or the book.

But now, I'm letting everybody know... “A Caregiver’s Guide to Chronic Fatigue Syndrome” is available and officially launched!

Go see ====> http://www.cfidshope.com

Just in case you're wondering, I AM still taking care of my health. In August 2006, some folks with CFIDS sent me emails, reminding me to get more sleep, to take better care of my health. Thank you - I took your advice and slowed down to a crawl.

I won't write her whole name here, but "M" wondered the "what-if" question that a lot of PWCs ask - "What if I had taken better care of myself? Maybe if I hadn't done so much I wouldn't have gotten Chronic Fatigue Syndrome...."

Her question brings tears to my eyes, even now. So many CFIDS victims ask themselves that, wondering if it's somehow their fault. The ignorance and disbelief that surrounds CFIDS, even after a lot of publicity, can make the smartest sick person begin to doubt themselves.

CFS, CFIDS, ME - this is one illness that sure is NOT from anything you did or didn't do. But still those thoughts persist, "What if I had slowed down? What if I hadn't pushed myself in my excitement over my great career back then?

I was blessed this past year, knowing that I would recover if I took the steps to heal.
BUT… my sick brother has not been able to count on anything for nearly 20 years – not since CFIDS grabbed him by the throat, brain and heart. And that's true for most CFIDS victims.

I'll be back in a few days. I'm keeping this short because I'm keeping my promise to myself -- get more sleep and see more of the people I love.

Tomorrow I leave bright and early to visit my daughter at the Vermont farm she works on - and my son will visit, too, from his end of Vermont! They're bright and funny, wonderful adults. I'm so excited at being together with both of them, at once!

By the way, my brother has had some success with a nutritional supplement he bought at Walmart - and I found an easy, honorable way to add a little bit more money to my month - and help other people, too. I'll tell you more in a few days when I'm back.

Oprah CFS article - bad choices....

noreply@blogger.com (Ann Corcoran) — Wed, 06 Sep 2006 03:24:00 +0000

CFS is NOT 'tired'!!!!!!!

Somebody please tell me why

1. the September Oprah article on Chronic Fatigue Syndrome mentions CFIDS only once.
2. is titled, "You Think YOU"RE Tired!" as if it's all about 'tired.' Where's the part about complete and incapacitating exhaustion?!
3. Has a photo of Michelle Akers up in the air kicking the hell out of a ball but NO photo of her being SICK
4. Has a head shot of Laura Hillenbrand looking gorgeous and healthy with GREAT hair. And no photo of her being SICK
5. Has NO photos of anybody being SICK
6. Has NO photos of anybody who's stuck in pajamas, whose weight has unaccountably gone up and up despite no change in diet or exercise level, somebody whose hair is messed up, whose hair is maybe filthy, somebody who's feeling like an AIDS patient in the last two weeks of his life?

I'm disgusted - and I'm going to write to Oprah and tell her so.

I'll say, "Oprah - you can do better. Don't mislead your readers. Tell them what you really truly know: CFS is a killer, a thief, it's got a stupid name that needs to be changed - and people need to know the truth."

I'm a caregiver and I want Oprah readers to know what it's really like for people who are SICK w/ CFS-CFIDS-M.E.

correction re CFS name change!

noreply@blogger.com (Ann Corcoran) — Mon, 28 Aug 2006 01:28:00 +0000

About the CFS-CFIDS-ME name change:

Here's the RIGHT name - It's PRO HEALTH that's campaigning for a new name.

Here's a message from the great folks at wwwprohealth.com.

If you want to check it out, here's part of the message. "...ProHealth launched the "Campaign for a Fair Name." We're inviting all interested readers and friends to get involved in helping to change the name of "Chronic Fatigue Syndrome" in the United States to one that does not trivialize the seriousness of the disease by referring only to a symptom. You can volunteer to help, if you like, by e-mailing us at CFSnamechange@prohealth.com. Just include your name and contact information, and we'll get back to you with more information on next steps as the project gets underway. "

Sorry about the goof up!

CFS Guide to Hope goes live in ONE MORE DAY

noreply@blogger.com (Ann Corcoran) — Mon, 28 Aug 2006 01:28:00 +0000

http://www.cfidshope.com is almost ready to go live!!!

That's what I was getting ready to tell you in the last post - but then I got going on the Name That Sickness thing.... can hardly believe it slipped my mind.

CFS-CFIDS-ME needs new name!

noreply@blogger.com (Ann Corcoran) — Mon, 28 Aug 2006 01:13:00 +0000

CFS-CFIDS-ME -- what a mouthful!

I am so in favor of voting for a new name for CFIDS. Immune Support has mounted a campaign to change the name. Go Immune Support!!!

It gets to be a touchy issue. Use the word "fatigue" and you continue to
1. insult our loved ones -and
2. mislead others who'll continue to believe it's just "chronic fatigue."

But say "myalgic encelphalomyelitis" in the U.S.?

Ha! People give you a blank look as if you've just talked about a brand new illness that's migrated from some other country (like West Nile virus has).

Question: How do YOU decide what to call CFS-Chronic Fatigue Syndrome - CFIDS- Chronic Fatigue and Immune Dsyfunction Syndrome - ME- Myalgic Encephalomyelitis?

Chronic Fatigue Caregiver's Guide to Hope delays....

noreply@blogger.com (Ann Corcoran) — Tue, 22 Aug 2006 02:51:00 +0000

My CFS book is my story about my brother, with plenty of ways for CFS caregivers to explain some of this miserable illness to other people. Margie, Web Site Designer Supreme, worked on the salespage today instead of going to a Red Sox-Yankees game today in Boston (!!!!!!!!!) - and it'll be up and running very soon. You'll know exactly when because I'll tell you that very day!
A Chronic Fatigue Syndrome Caregiver's Guide to Hope - coming soon to a computer near you!
at
http://www.cfidshope.com

CFS Caregiver's Guide to Hope countdown!

noreply@blogger.com (Ann Corcoran) — Wed, 16 Aug 2006 03:49:00 +0000

"A Chronic Fatigue Syndrome Caregiver's Guide to Hope" is almost ready to launch.

It's the story of my brother's CFIDS - CFS - Myalgic Encephalomyelitis.

I'm his caregiver, and it took me a long time to understand what he was - and is - going through. I don't know everything; I'm not an expert the way scientists are - but I did figure out some things that worked to help my brother, and helped me, too.

www.cfidshope.com

Look for it soon on a computer near you!

I thought you might want to know: 10% of each sale to the CFIDS Association of America to help their efforts to raise public awareness of this miserable illness.

Take care,

Ann

www.cfidshope.com

CFIDS is an Inconvenient Truth

noreply@blogger.com (Ann Corcoran) — Mon, 14 Aug 2006 04:04:00 +0000

It's hard to stay hopeful sometimes.

Saw Al Gore's movie today. The photo of the world made me realize how much we are in danger of losing.

I thought of my children. They are in danger of losing so much. I see them as all the ages they used to be and the age that they are now, when I look at them. They are like the world to me. I want their lives to be wonderful, rich, and I want their children (un-conceived, as yet) to experience the unbelievably gorgeous earth that I've loved. I fear that those some-day grandchildren will have some other kind of horrendous life.

I miss my brother. He had a good few hours yesterday on his birthday. He misses himself, too - all the other ages he's been. I have no idea who I'll run into when I talk with him tomorrow - depending on how his CFIDS goes.

When I am about to lose something, it becomes even more precious. The earth seems like CFIDS to me. So sick, unable to heal itself without immediate human intervention. (We're the ones who made it sick, after all)

Thank God Al Gore ended his movie with a call to action and hope. Take action. That's where the hope is.

So I'm reminded of my own determination. Take action. That's how to keep hope.

So it is with CFIDS.... or CFS... or M.E.

Happy Birthday Ed!

noreply@blogger.com (Ann Corcoran) — Sat, 12 Aug 2006 23:47:00 +0000

Happy Birthday, Ed!

Ed's my brother. He's not having a very happy birthday. CFIDS is like a big thick iron bar that is lying on top of him. Call it Chronic Fatigue Syndrome if you're used to saying that, but if you're reading this, you already know -- Ed's not chronically fatigued at all. He's chronically SICK.

Ed hurts. Ed can't think right. Ed can't sleep. Ed feels like he hasn't been to sleep for a month. Ed can't fix a meal. Ed can't straighten up around the house. Ed is Out of It.

He's had CFIDS for 20 years. TWENTY YEARS OF FEELING CRUMMY. "Crummy" is a much nicer word than what I started to write - but I'm being polite.

Ed's counting his blessings: a roof over his head, a car that works, good neighbors, a great project he'd really love to work on.

Ed's my best friend, my personal spiritual mentor, and I wish I could make him well. I feel like I'm waiting for him to "come back." I know he's waiting for himself to "come back."

I'm glad Ed was born. I'm proud he's my brother. He's the one who urged me to bang the CFS drum, to make noise about CFS - so I did, with his support. So I got an idea of how to help people like me (caregivers) and people like Ed. And soon, you can click on http://www.cfidshope.com and see what I'm doing about it.

Here's to your health!

Ann

CFIDS-CFS-ME Awareness - It's About Time!

noreply@blogger.com (Ann Corcoran) — Wed, 09 Aug 2006 22:33:00 +0000

Hi everybody,
I just emailed a lot of you but I figured I'd reach more people with this blog.

The big news is:
Finally - regular old news coverage that lets people SEE and HEAR what CFIDS does to people!!!

Click on this link right away to SEE the Minnesota, U.S. TV station's local news story.
This is exactly what we've hoped would be happening soon.

When enough people know, they start to care.
When they care, they have a shot at taking action to HELP.

There's reason to hope!

http://wcco.com/topstories/local_story_218211856.html

Looking for a good gift for that relative or boss who still says that Chronic Fatigue Syndrome means chronic fatigue???

My book, A CFS Caregiver's Guide to Hope, will be available soon at http://www.cfidshope.com

Take care,
Ann