Toni's sister and the family needs prayers!

Toni's sister had triplets, delivered early, and then she needed to have a torn aorta repaired.

A couple of days after the birth, one of the boys, Joseph, had to undergo emergency surgery to repair a hole in his colon.

Here is a link with more info and articles from the newspapter: http://www.ardsil.com/cgi-bin/ubbcgi/ultimatebb.cgi?ubb=get_topic&f=5&t=000116

How annoying is this?

I went to the Party Store today to get my youngest a pinata, and some other stuff for her birthday party, and we are in line waiting to pay, behind two others.

This older woman right in front of us then turns to me and says, "I am going to take a long time, I have a return."

There are only two employees in the entire store; one is doing some balloons and the other is at the register, and on a personal phone call at the same time. She does not offer to let me ahead of her... She just wants me to know that it will be annoying and she is going to do her part to help!

Could be worse, I could be in Katrina's path. Prayers to all of those folks who are dealing with that.

The dreaded oreo...

Yes, the dreaded oreo is back again on the front page of my daily paper. They have a photo with a person dressed up in as a huge oreo...

I just cannot explain my insatiable desire to run to Happy Foods and get myself a package! (kidding)

I admit, I have not read the articles (who has the time! I need to read some real news stories) but I would think that more people would go out and grab a package, just by reminding us that with all of the cookies out there, oreo is one of the big winners. I cannot wait until tomorrow, just to see the headline and the big Oreo picture!!!

it must be me!

Quite obviously, there is nothing going on in this world for newspapers to highlight, especially on the front page of their Sunday papers.

Today, the Chicago Tibune has an in depth, three part, front page story about:

"Craving the cookie; The brain is wired to love sweets, but are they addictive?
America’s iconic cookie captures the nation’s burgeoning dietary dilemma."

http://www.chicagotribune.com/news/specials/chi-oreo-1,1,7603329.story?coll=chi-news-hed


OK, are we a nation obsessed with addiction? Aren't there enough real addictions out there for people to be satisfied or does everyone have to be addicted to something?

Oh, by the way, I do not have the 'Cookie Addiction'

Still sticking to only my diet Coke/caffeine addiction...

the latest SPAM

What is the deal with SPAM? it runs in cycles, doesn't it? All weekend, I have received probably close to a hundred SPAM emails for different TV show DVDs. For a while it will be viagra, then valium, then enhancement items... But always those phishing emails, trying to get my personal info... ebay, or some bank...

It is, too say the least, annoying. I just send them directly to my SPAM folder.

Isn't it amazing, too, how accepting people get about receiving all this crap...

700,000 people affected by ARDS each year in the US???

I forgot to post this the other day, but at our mini-conference, Dr. Michael Moore said that there are as many a 700,000 ARDS cases in the US each year!

After he spoke I asked him, did he mean in the world? What was this that I had heard all the time about 150,000? I said that I always thought that 150,000 was a low estimate, but 700,000?

He said that the research shows an incidence the equals about 200,000 to 700,000 per year in the US. To me, that sounds like an epidemic. But no one wants to know about an epidemic that cannot be prevented, cannot be cured, and can only be treated, and not so well... Or at least, no well enough.

hocking, isn't it? Or is it just shocking that still no one in the general public really knows about ARDS and that the media barely reports on it.

more disorders...

reading the chicago tribune this morning and I learned of another disorder, addiction as they state in their headline! "Sun worship could be shaded by addiction"

It is the dreadful sun worshipper addiction... I wonder what the DSM-IV says about this...

What a relief; though I have the caffiene addiction, I gave up my sun addiction years ago!

pictures from the benefit

http://www.imagestation.com/album/pictures.html?id=2122291202&slideshow=1

we will get more photos soon and I video taped the conference and our webmaster is going to put it on dvd! but it is not prefessional so if anyone gets it and feels a bit 'blair witch' don't bitch & moan to me... I did my best, no tripod, and it was a long day.

Where does that face go?

Today's burning questions...

yes, the elusive face is gone again. (checked the site it came from and it is down... again :((

Mini Conference

I think the mini conference was so valuable, in terms of learning about ARDS, having questions answered and the opportunity to ask questions... After facing ARDS, whether it be with a family member or one's self, how often do you have questions that you think about later, or lingering ones that never seem to get answered?

I will post the synopsis that I wrote for the site, but two things really stand out... Dr. Moore was talking about numbers... he said that there are as many as 700,000 cases of ARDS per year in the USA. 700,000! I asked him about that and said I always heard it was at about 150,000 cases. He said that the literature he read showed a range from 200,000 to 700,000. We discussed this later, saying how frightening it would be to let people know that there were this many cases, and obviously, a huge number of deaths, and if one were to admit that a person can get ARDS from seemingly almost anything, well, do people want to know about that?

The other thing was the discussion about when a PT should be in the ICU to evaluate a critically ill patient... since I have heard many things from families, and realize that some smaller hospitals do not have a staff of PTs and/or OTs, I realize that this is a very real issue. And PTs cannot just go into a patient's room, they must be 'invited' or an order must be written for PT.

While I understand that often physicians are forcused for good reason in getting the patient through the day, to the next day, etc... and sometimes it is more difficult to see past that point, it is said over and over again, that the ARDS survivor's reduced quality of life is usually based on their physical limitations rather than anything that has to do with their lungs. If the PT or OT were allowed in to the ICU to evaluate a patient sooner rather than later, maybe that would alliviate some post ARDS physical limitations. And one cannot ignore the cost of PT or OT. it is a real issue that can limit care that is not viewed as acutely needed...

Anyway, here is the synopsis:

At 4:00 PM, the ARDS Foundation's Mini-Conference held at the Deerfield Hyatt, began with the ARDS Slideshow. The first speaker was Dr. Scott Budinger, from Northwestern Memorial Hospital in Chicago, Illinois. Dr. Budinger addressed the most common cause of death in patients with ARDS and discussed the issue of fibrosis in patients with ARDS. He spoke of current ARDS research, including projects with which he was involved.

Next to speak was Dr. Michael Moore, also from Northwestern Memorial Hospital. Dr. Moore addressed both the challenges of treating a patient with ARDS as well as the issues an ARDS survivor might face after surviving the syndrome. Dr. Moore illustrated the phases of ARDS, the post ARDS challenges, including issues of lung function, infections, and the question on everyone's minds: 'Will I get ARDS again?' His talk illustrated the facts, issues, and even the uncertainties when dealing with acute respiratory distress syndrome.

After our dinner break, Steven Sadowsky, Professor at Northwestern University and a physical therapist, spoke about the critical importance of physical therapy for patients with ARDS. He stressed that ideally, the sooner the patient is evaluated by a physical or occupational therapist, the better it is for that patient, even if the patient might be too critical to be worked on. He illustrated, as did Dr. Moore, that many post ARDS complaints that lead to a reduced quality of life, revolve around the patients diminished physical capacity. He offered concrete suggestions to those affected by ARDS to improve their physical capacity and therefore, benefit their future quality of life.

Finally, Pastor Jack Yonts, who is an ARDS survivor, spoke of the power of prayer with regard to his own experiences as well as what he had witnessed with others who are critically ill. As an ARDS survivor who was critically ill for a lengthy period of time, his perceptive is incredibly invaluable to anyone in the ARDS Community. For questions of prayer and grief, he stressed that those of any faith can benefit. Pastor Yonts addressed those times when people find that they cannot pray for themselves, or even when those closest to the patient have difficulty in seeking out prayer, there are others who can take that role. And while Pastor Yonts continues to struggle with certain post ARDS issues, he continues to inspire others.

Each speaker took questions from those in attendance and clearly the importance of being able to learn, to be able to inquire, from these experts was invaluable.

The ARDS Foundation is grateful to all four speakers for their willingness to share their knowledge, and their time, for the benefit of the ARDS Community.

ARDS 'March for Miracles'

Just wanted to talk about the 'March for Miracles'

I wish everyone could have been there with us! It was our third year of doing this event, and I think it was the best yet.

Sadly, after a summer of sun and heat, we did have a few drizzles every so often, but it was not too hot, so that was great.

We began our day at 6:30 AM, Paula and I, that is... (and my daughters...) but someone else had the tables, so we pulled the stuff out of our cars and waited. And waited. And waited...

Then some of our other volunteers arrived, but without the tables, we waited. Just with more people. And more volunteers, but no tables! Argh!

Finally, the volunteers with the tables arrived, and we started to set up. But who knew that people would show up on time???

Well, they did. So we were scurrying to get everyone registered, set with a T-shirt, and some breakfast... (and we still needed a couple more tables that had not yet arrived...)

Still, everything managed to move smoothly enough, and quickly we set up our silent auction table, and face painting tatoo table.

After that, it was much easier, with people coming in at a slower pace, and others going off to walk through the gardens, which are always so beautiful!

Once again, we saw many of those who have supported the ARDS Foundation year after year, and many new faces!

Jessica's family drove twelve hours to join us! http://ardsusa.org/ARDSkidsStories.htm#jessica

And I know that Jessica would love to talk to other kid's who have had ARDS! If you know of a young girl or boy who might want to email, IM, whatever, please let us know. Jessica is a wonderful, sweet girl with a fantastic family to surround her, and yes, they know what she is dealing with but how great would that be for her to talk to other kids who really 'get' what she has endured with ARDS, and its after effects.

We were thrilled to meet Kathy and Tina, whose plight we had followed for so long, via email and the message board. http://www.ardsil.com/cgi-bin/ubbcgi/ultimatebb.cgi?ubb=get_topic&f=5&t=000066 They also drove, not quite as long as Jessica's family but still, it was a long drive. We were so happy that they could join us! Kathy promises to add her amazing survival story to the website too.

Barbara Shapiro, who lost her mother to ARDS, and joins us for every walk, was there! Always wonderful to see her. Barbara Hengels, who lives in the Chicago area, also joined us for the first time. Lisa Sullivan, and ARDS survivor who lives only minutes from me, came with a huge group of friends to support the cause, and of course, Lisa!

Deb and Stephanie, Chicago area survivors who I have enlisted to help me all the time, also were there. They are great, always helping to promote awareness of ARDS and the foundation.

Sharon Taylor, who lives in London but has family in the Chicago area, also was there with her family. This is the second walk that they have been at.

I know that I am forgetting people right now, but it has been a long weekend; I will post with more info, too, and I am sure that Paula will as well and fill in some gaps!

Oh, the silent auction was a lot of fun! First time we did that but we will continue the silent auction next year as well.

Will post later about the amazing Mini-Conference that we had later that day... it was possibly the best thing that we have done in terms of offering information to the ARDS Community in plain english.

apparently, I have a mental disorder...

Was watching the news today and learned that I am 'mentally ill'

Yes, they have changed things to include caffeine addiction to the list of mental illnesses!

Caffeine-Related Disorder is what it is called. Here is what one site says about it:

LUDICROUS DIAGNOSIS. Psychiatrists base their diagnosis off of a book known as
the Diagnostic and Statistical Manual (DSM). This book contains such
classifications as “Caffeine-Related Disorder” (can be found on page 212 of this
book); “Mathematics Disorder” (can be found on page 50 of this book);
“Expressive Language Disorder” (can be found on page 55 of this book); or even
“Disorder of Written Expression” (which can be found on page 51 of this book).
ANY of these “diseases” are cause, per the Diagnostics and Statistical Manual
for a person to be put on powerful, mind-altering psychiatric drugs.

http://www.free-press-release.com/news/200507/1121577229.html
Oh, no, one more thing to worry about!! Wait, I gotta go get myself another diet Coke! See ya!

OK, I cheated...

Just a little...

I was supposed to drink water at 12:35 pm but at 12:25, I could stand it no longer!

Still, I waited (patiently-NO WAY) for the 2:35 hour...

At 2:15, I could wait no more. I got myself a nice, ice cold diet Coke and was in heaven.

I did following the eating dictate; waited until after 2:35 pm...

Have a spliting headache and the leads are quite annoying, itchy.

Can't wait to get this crap off of me...

Sitting here with a camera in my belly...

OK, not exactly in my belly but I went in this AM for a capsule endoscopy this morning.

What is that? A very interesting and relatively pain free procedure.

However, we did not book the procedure until yesterday morning. And a little after 10 AM, the woman told me that I had to stop eating at noon and take a (yuck) laxative (two actually) at the same time.

Since I had not yet eaten, I rushed to get something in my system. But my biggest concern is the obvious caffeine withdrawal that I am experiencing now.

Yes, I am a diet Coke fiend! All day long, you can find me with a bottle (not can) of diet Coke. I actually ran out and got myself diet Mountain Dew, to drink until I had to stop... So sad...

This morning, I swallowed the camera and have this crazy aperatus with several leads hooked up to my body. It is a damn fashionable look, I do believe.

I can drink water at 12:30 (a half hour!!! Yippie!) but we all know that it is not diet Coke. Not that much of a thrill... Two hours after, I will be at my manicure (nothing gets in the way of my fabulous nails! And we be getting my first diet Coke (yes, it is true, it has only been a day...)

Oh, I am doing this because of that whole anemia thing... will let you know the results! Cheers.

HOT!

It is hot in Chicago, day after day, after day...

How is it by you??