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What Was Life Like Before The Internet?
Posted on October 25, 2006 at 02:35 AM
As time marches forward it is becoming increasingly difficult to remember what life was like before the Internet. For some of today's youth the Internet in it's current form has always existed. So let's take a moment to reminisce about what life was like before the Internet (and what has changed since it's conception) before we all forget.
Before: Family time was spent watching TV or playing board games together.
After: Family time is spent in separate corners of the house, each on their own computer instant messaging one another.
Before: People could properly spell and used decent grammar.
After: Now thx 2 IM and SMS, they spel lik dis. LOL!!!!!!
Before: We wrote letters to friends and loved ones far away, and maybe even the occasional Pen Pal.
After: Now we just forward joke e-mails and Internet hoaxes to loved ones and friends while not even bothering to remove the hundreds of forwarded addresses contained within the message. By the way, what's a Pen Pal?
Before: Door-to-door Encyclopedia salesmen.
After: Wikipedia donations.
Before: Recording industry execs making fat profits all-the-while complaining about the bootlegging of their music.
After: Recording industry execs making fat profits all-the-while complaining about illegal downloading via p2p networks.
Before: We used the Dewey Decimal System and Microfilm to find information at local Libraries.
After: Google
Before: Phone books
After: Search engines
Before: Teen lines
After: Cell phones, IM, SMS, email, Skype, etc...
Before: Floating checks to avoid overdrafting your checking account.
After: Immediately bouncing checks (or maybe you're asking yourself what is a Check?)
Before: Getting caught looking at your Father's Playboy.
After: Catching your Dad looking at Internet porn because he forgot to clear his browser history.
Before: Kids would hang out at Video Arcades, Malls, Roller Rinks, and pizza places.
After: Kids hang out at MySpace.com
Speaking of MySpace...
Before: I have a friend named Tom.
After: Everyone has a friend named Tom and no one realizes they can easily get rid of him.
Before: People went on blind dates or met people at the bar to find romance.
After: Now we sit at home alone and surf Match.com to find romance.
Before: We scoured the neighborhoods for Garage Sales with the best junk to buy.
After: eBay and Craigslist.
Before: VCRs and TV Guide
After: Tivo
Before: Walking billboards, bumper stickers and print advertising.
After: Viral videos and forehead advertising.
Before: Gossiping about a friend, neighbor, family member, or cow-orker.
After: We google people to get dirt on them.
Before: Shopping the day after Thanksgiving not quite sure of the deals you will find.
After: Planning your Black Friday assault in October thanks to web sites like BlackFridayAds.com.
Before: Newspapers, Radio, and TV.
After: Social news sites, Podcasts, and YouTube.
Before: Commuting to work by car, bus or train.
After: Telecommuting to work in your underwear.
Before: We got our news from the likes of Rather, Jennings and Brokaw.
After: We get our news from the likes of Stewart, Colbert, and Drudge.
Before: Children wrote letters to Santa Claus and mailed them to the North Pole.
After: Children send email to Santa Claus at northpole.com and track his progress Christmas Eve via satellites on NoradSanta.org
Before: Dear Diary, ....
After: Don't you read my blog?
If you have anything you'd like to add to the list, feel free to leave your contribution in the comments below.
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Posted by joeschmidt at 02:35 AM | Comments (14) | post to del.icio.us
The Greatest Ride
Posted on October 24, 2006 at 01:29 AM
About a month ago one of the greatest time wasting apps since the dawn of the internets debuted on a site called Deviant Art. It's a little flash app which is known as Line Rider. It's a simple little app that lets you draw a path for your intrepid rider to traverse. His fate is in your hands as you design his destiny, either big air or big time crash.
I haven't had a lot of time to sit down and play with line rider much in the past month since it's debut, but I did have some time over the weekend to test my line riding skills. Let me warn you, it is very easy to lose yourself within Line Rider's clutches, so give yourself ample time to play with it.
Though let me give you a few helpful hints for the Line Riding newbie within you. The trick with line rider is keeping the rider on the sled. Our little buddy is very sensitive to small bumps at high speeds so it's imperative that all transitions, jumps and loops be perfectly choreographed.
Line Rider doesn't have any editing features, (i.e. no undo or erase). If you screw up half way through and the rider gets ditched, the only hope you have is that you saved your progress up until that point so you can revert back to a previous change (I didn't figure this out until about half way through my creation). You also can't project where the rider is going to go when he jumps, you have to kind of pan over and draw a line (which can take a long time to perfect). One last warning, if you have a sweet creation and for some reason you refresh you browser or it crashes you can kiss it goodbye as your saves are only good for your current viewing session.
Though it's because of these limitations which make creating the greatest ride all that more sweet.
Music in the following clip is performed by one of the best bands to come out of Omaha called Criteria. They rock hard so check them out when you get a chance.
With that being said, I proudly give to you "The Greatest Ride". Enjoy.
Unable to see the video? Click here to view the clip on YouTube.
Tools used to create this clip are listed as follows:
Firefox - browser to display the flash app
Camtasia Studio - provides the screen capturing goodness.
iMovie - brought everything together.
ed. note: If you're wondering how long it took me to make this, I'll just say that it took about 1 hour for each 20 seconds of line riding beauty you see in the clip. I'll let you do the math.
Posted by joeschmidt at 01:29 AM | post to del.icio.us
Use GooGhoul To Find Local Area Haunts
Posted on October 19, 2006 at 01:41 AM
It's that time of year again, where shrieks, shrills, and chainsaws fill the night air. So you're looking to find local haunts to scare the bejeebers out of you, or maybe you've got $20 burning a hole in your pocket? Website GooGhoul will help you find local Halloween events such as, Haunted houses, mazes, hayrack rides (even haunted mini Golf), all sorted by distance based on your zip code.
The site lists reviews of the haunt along with directions so you can evaluate whether the event is worth your time and money. They also allow you to submit your own event to be listed in their search results as well.
Though being a bit disappointed with the results GooGhoul gave for my local area (5 events in a 50 mile radius), it almost inspires to me to create the "JoeSchmidt.com Experience" as my very own Halloween event. You know, charge $5 a "head" to have people run around my darkened backyard as I chase them with a chainsaw (chainless of course). Maybe for $10 and a signed waiver (prepared by my legal department) I'd do it with the chain on. But... I'm guessing that might not fly to well with the neighbors.
Posted by joeschmidt at 01:41 AM | Comments (0) | post to del.icio.us
Microsoft Releases Internet Explorer 7... Finally
For those of you who are fans of one of the most unsecured web browsers available, you may be happy to know that Microsoft has finally released Internet Explorer 7.
Trying to be more Google-like, Microsoft has made beta builds of IE 7 available for general public download for almost the past year now. For Microsoft this is a step in the right direction, as giving users the opportunity to beta test your product before you publicly release it is always a good idea. Though I can tell you that this blog can barely count on one hand the number of times I have downloaded, installed and uninstalled the previous beta versions of IE 7 ( kind of gives you a general idea of my impression of IE 7).
I will give it to Microsoft though, IE 7 is a vast improvement over IE 6. I just hope they realize they're already a few years behind Firefox, Opera and Safari.
Instead of trudging the Microsoft line, might I suggest you first try one of the aforementioned web browsers before you download IE 7. Your internets will thank you for it.
Posted by joeschmidt at 12:36 AM | Comments (0) | post to del.icio.us
GoodSearch.com To Honor the OI Foundation On November 8th
Posted on October 10, 2006 at 12:24 AM
I received an email last week from GoodSearch.com co-founder JJ Ramberg informing me that her web site will be honoring the OI Foundation as the Charity of the Day on November 8th, 2006. Apparently they saw my Blogathon for OI (and the post in which I talked about GoodSearch) and decided that it would be a great opportunity to showcase the OI Foundation on their web site.
So what does this mean you ask?
Does it mean that a portion of the money generated from searches that day will be donated to the OI Foundation?
Not exactly.
To clarify, I asked JJ what it means to be the "Charity of the Day" and she explained to me that it is an opportunity to highlight organizations doing good works. The OI Foundation logo and a link to their site goes on the GoodSearch.com homepage and is viewed by all the people who come to GoodSearch on that day. It is more of an awareness opportunity than a financial one, though generally organizations use the Charity of the Day honor as a peg to remind their supporters to use GoodSearch.
JJ gave me an example of how the Families of Spinal Muscular Atrophy (FSMA.org) organization jumped from earning about $1.87 in the month of March, to $270 the very next month after letting their supporters know when they were the Charity of the Day.
So mark your calendars and make sure everyone you know is aware of GoodSearch.com to help raise money for the OI Foundation. (or one of the other 20,000+ charities and non-profits listed)
Thanks to JJ and Ken Ramberg for all the good work you're doing.
Posted by joeschmidt at 12:24 AM | Comments (2) | post to del.icio.us
And the Winners are...
Posted on October 03, 2006 at 02:49 AM
A BIG thank you to all of you who donated to the 2006 JoeSchmidt.com Blogathon benefitting the Osteogenesis Imperfecta Foundation. As of 5pm EDT October 2nd we raised $725 for the OI foundation. I've got the a list of all thos elgible for the drawing, so let's see who will win the 4GB Silver iPod Nano.
So how did we determine the winner of the iPod Nano?
I have a list of all those who were elgible to win in an excel spreadsheet. I assigned a random number to each entry then sorted the list based on that random number. Once sorted, each entry's random number was recalculated and then resorted. I repeated this process 15 times to properly mix-up all the entries listed.
We then printed out numbers corresponding to the total amount of entries listed, cut them out, and put them into a hat. The Head of My Legal Department (my 7yr old son) then reached into the hat and pulled out one number. The number corresponding to the entry listed in the excel spreadsheet was the winner of the iPod Nano.
Editor's note: drum roll please....
The Winner of the 4GB Silver iPod Nano (donated by Cory Reinert at Insight.com) is.....
Karen L. from Wisconsin!
Thank you Karen for your donation. Once I get your contact info, your iPod will be on its way.
And now for the drawing for two signed copies of Patricia Minor's book: "What Life Is Like Living With OI"
I repeated the same process for the drawing of the books as I did for the iPod Nano. Everyone who left a comment was eligble to win a book. Also eligble were those in the OI community who sent me their story. I took all of those names into excel and repeated the same process as I did for the iPod Nano.
The first winner was Su S. and second winner was Stacy G. Thank you both for your contributions and thank you to Patricia Minor for donating the books!
Final Notes
One last thank you to Cory Reinert at Insight.com. If you are in the market for purchasing computers or I.T. related equipment, please give Cory Reinert a call. Mention to him that you heard of his services through the blogathon and he will hook you up with a great deal.
Please leave comments on the blogathon posts! While the 2006 blogathon may be over, all of the posts written during the blogathon will remain on this site for eternity (i.e. a really long time). There is a lot of great content that needs your input. People searching for OI related topics in the future will stumble across the entries and your knowledge will help those seeking to learn more about OI. You can review all the blogathon posts by going to the 2006 Blogathon for OI archives page.
The blogathon donation page is still active, so for those of you who would still like to donate please do so. We are only $225 shy of our $1000 goal, so a donation of any size would be greatly appreciated.
Thanks again to all those who contributed and helped spread the word of this blogathon to others.
Posted by joeschmidt at 02:49 AM | Comments (3) | post to del.icio.us
Well it's about that time...
Posted on October 01, 2006 at 09:11 AM
Looks like I kind of over shot my 24 hour blogathon and stretched it out by an extra hour. I'm signing off for now but will check back later tonight. For now just a few final notes:
Please donate and help us reach our goal of $1000. Remember, any amount helps and you will be able to donate until 5pm EDT Monday, Oct. 2nd.
A big thank you to all of you who have donatd thus far.
Read through all the past stories if you haven't thus far. You can go to the 2006 Blogathon archive page to read every post.
Comment on posts! There are a lot of stories and articles that need your input. Your knowledge might greatly benefit others in the OI community.
Thank you to those who submitted stories. Everyone, whether or not they have OI, greatly benefitted from them.
Thank you to Cory Reinert at Insight.com for donating the iPod Nano for tomorrow night's drawing. Remember, for every $5 you donate you get a chance to win the iPod.
Thanks to Stuart Tart at the OI Foundation for all your help.
Thanks to all the bloggers who helped publicize this event.
Thanks to my cousin Michelle, her husband Jeff, and their son Ryan who was the main inspiration for this event.
And Finally, Thank you to my wife and son who had to put up with me being on the computer for the last 25 hours. I love you both and thank you for your supoort.
Good night everyone.
Posted by joeschmidt at 09:11 AM | Comments (4) | post to del.icio.us
Stories From the OI Community: Sharlene's Story
This story just came in last night from sharlene whose daughter has OI. Here are her words:
My daughter was born two months prematurely by a Caesarean delivery and she was breech. Her apgar score was zero, dead, a normal apgar score ranges between seven and ten. She made a remarkable turn around and life continued.
At thirteen months when she started to walk, she fell and broke her femur. There was talk of child abuse. She spent two weeks in the hospital in traction, then was put in a hip spika cast, which goes up the chest, down the affected leg, and half way down the other leg, with a bar to help carry her, for those of you who don't know what that is. That stayed on for two months, then once out of that we were told to keep her still for several weeks. But what they have now found out is that you should have not done that. Now a child becomes weight bearing on the fracture as soon as possible. So with our daughter, before doctors knew this, it was a terrible cycle of fracture, traction, casting, and immobility. She fractured the other femur and it was back to the hospital.
This time no one would listen to me, as more people suspected abuse. The tincture of benzoin which is rubbed on before casting worked well the first time. But the second time it caused a severe reaction. The doctors kept telling me things were normal, they were annoyed with me since they suspected child abuse.
The family doctor came in and told them it was probably an allergic reaction, so they uncovered her legs, and her heals were in terrible shape. Now the hospital was concerned about a law suit, and I was so disgusted that I wanted her moved immediately and taken to another hospital. But our doctor talked to us and told us we would do more harm by moving her. Then a group of doctors reviewed things and agreed it must be OI. Well, we would later, after the femur healed, take our daughter to a Boston hospital, and they told us to go home, of course she has OI.
Years later we would find out which doctor expected child abuse. And he was covering for our regular doctor on the weekend when our daughter hurt her leg, we were not sure what was wrong, as she was braced at the time. But this doctor insisted on taking the brace off, where our regular doctor would not do that. I took it off very carefully, but the doctor called me outside the room to look at the x-ray, as he could not find anything wrong. While I was out there, the nurse put the brace back on and our daughter screamed. Next week, when our regular doctor took an x-ray of the leg, he found she had a complete fracture. She had a "green stick" fracture, but the force of putting the brace on turned it into a complete fracture. We had a few tough years.
Having OI and entering shcool was a problem as the small town we lived in had never seen a child with any disability, especially OI. But she attended grade school with an aide, who followed her to middle school. We then moved out of state and she enrolled in a larger high school, which had seen many different health problems, so her OI was no big deal there, and she went to school like a "normal" child.
For those who don't know medically what to look for, you would not know my daughter has OI. She is of the milder group, though all her fractures have been to the larger bones. One leg is a bit shorter, where all but one fracture have happened, so she needs to use a lift. That was tough during teen years. If she does not wear the lift, she will have back problems. She exercises intensly, but now has some problems with muscles. Collogen, which makes the bones strong, is also in other parts of the body, so when you work one area, another area may become affected.
So I hope this might help someone, or inform someone. And I hope the blogathon goes well. And for all you OI affected people, if you have not attended an OI Conference, go to the next one in Crystal City, Virginia, which is minutes away from Washington, D.C. and the date is August 1 - 3, 2008.
Thank your Sharlene for sharing your story.
Posted by joeschmidt at 08:51 AM | Comments (0) | post to del.icio.us
Are you going to the OI National Biennial Conference in 2008?
My cousin Michelle and her husband went to their very first National OI conference this summer which was held in Omaha. I asked her to write down her thoughts on what they experienced in order to possibly persuade others who might be undecided on making the trek to Virginia in 2008.
Here is what she said:
Our trip to Omaha was a real eye opener. This was the first OI Conference we have attended. I highly suggest going, if possible. We received so much information that we never did think of and met with other OI parents who told their stories. It was very emotional.
We decided not to bring Ryan, not knowing what to expect. We wanted to learn anything & everything, but we missed having him there. I suggest bringing your kids. They have trained caretakers there or you can bring your kids into the sessions with you. It is a very relaxed atmosphere, and you can pick & choose the sessions you want to attend.
A couple of things we learned in which we never thought of was: Who was going to take care of Ryan if something happened to us, God forbid. Financially, most children are under some type of medicaid/social security and the money part has a lot to do with it. All of our assets/belongings could not go to him. For Ryan, any assets above $2,000 would make him ineligible for his insurance.
Also, we needed to make sure whomever was to take him would be physically & emotionally ready to do so. It is a huge decision, but should be done right away. We learned that children have IEP's when they go to school or some type of written document stating from how to treat and take care of them, what they can & cannot do during school and any special needs that they have during school, i.e. riding the school bus, therapy during school, going to the bathroom, gym class, recess, etc... So many things that people take for granted.
During the IEP class we found out that there are people who advocate for your children's needs and specialize in helping parents get what their child needs at school. We attended a peer to peer group for parents with children going to school and we found that very informative. They told us their experiences and what they have done. It is so much better to hear from people who deal with it than the text book version. Throughout the whole conference people were willing to share their life story. It is so much better to hear it in person than on the Internet where you cannot see the emotion.
Attending the conference is somewhat expensive, but if you start saving for it ahead of time it is well worth it. Most states offer funding for people to attend these types of events.
If you would like share your National OI Conference experience as well, please do so in the comments section.
Posted by joeschmidt at 08:41 AM | Comments (1) | post to del.icio.us
Stories from the OI Community: Peter's Journey's
Peter submitted this story to blogathon and it tells about his journey's and fight with and final acceptance of his OI. Here are his words:
I have OI type 1, that is the mildest form of OI and I was the first person in my family to have it! My family had been screwed up for years, but my having OI sent them really over the edge. Or, at least, I was the excuse.
It took me a long time to accept that I had OI. I've always been a good swimmer, so I swam that famous river in Egypt "De Nial" for years. While I made things worse for my body, I did have a lot of adventures that I'm glad I had. If I'd behaved in a "responsible" manner, my body might be in better shape today, but I wouldn't have traveled by myself to Mexico and Central America, learned to run heavy equipment like bulldozers and front-end loaders, repair cars, fall trees, do
construction work, even lay out and build a road. I learned to trap fur-bearing animals, too.
Pretty odd-ball stuff, yes.
While some of it wasn't adaptive to living in the urban world, I gained a great deal of confidence and competence. Even now, twenty years after I had to stop living like that, out in the boonies, I look back on it with wonder and have some happy memories. There are painful memories, too, where I got too far into self-medication (and went into a downward tailspin that almost ended in self-destruction). But, that was what it took; like the saying goes, it takes what it takes. We all do the best we can, I believe, at the time.
It's easy to forget physical pain when the memories are otherwise good. That is, until the pain comes back. It does. Even so, the memories stay good, most of the time. I wouldn't give them up for anything.
Thank your for your story Peter. You can read more about Peter on his blog at disturbingthecomfortable.blogspot.com. He is also a writer for Audacity Magazine.
Posted by joeschmidt at 08:25 AM | Comments (0) | post to del.icio.us
My Final Donation Update (for today at least)
It seems as though the donations have stagnated at the 51% mark and we are about $490 short of the $1000 goal. I would like to thank all of those people who have donated thus far and encourage anyone who hasn't yet to give whatever you can. $5, $10, or $15, any amount is appreciated.
If you are "on the fence" whether or not you should donate, just remember that for every $5 you give you get a chance to win the iPod Nano (graciously donated by Cory Reinert at Insight.com) I'm just dying to give away tomorrow night.
Remember, you will have the opportunity to donate all the way until Monday at 5pm EDT when the donation page will close and we will start the drawing for the iPod Nano.
Thanks for all your support.
Posted by joeschmidt at 08:14 AM | Comments (1) | post to del.icio.us
Is it getting light outside or is it just me?
It's not me, it's getting light outside.
Good morning sleepy heads! Welcome back. Did you sleep well last night? Me, not so much.
To catch up on what you might have missed be sure to go to the 2006 Blogathon Archive page. There you will find one page that lists every single blogathon post in its entirety.
Posted by joeschmidt at 07:55 AM | Comments (0) | post to del.icio.us
Helpful Tips For New Parents Of Children With OI
I asked my cousin Michelle, whose son Ryan has OI, to put together a few tips about caring for an OI child. I told her to write about things that she knows now, but wish she knew (or wished someone had told her) when Ryan was just a baby. OI is a scary thing, especially if you are parents for the first time, so here are some helpful tips from Michelle.
The first initial thing that we did when we found out Ryan had OI was to write down the words "Osteogenesis Imperfecta". Unless you are familiar with it, it isn't an easy term to remember. My aunt typed in OI and printed out info for my parents. They found in the literature, that egg crate foam in the car seat is very beneficial. A 5lb baby doesn't exactly fit well in a car seat, not to mention a fragile baby.
We cut out pieces from the foam pad and put it in the corners of the car seat and on each side of his head. When we came home we also put egg crate foam in the bassinet and he still has it in his crib today. The egg crate makes it more comfortable and evenly distributes his weight.
Years ago, parents were told not to hold their children. Today, it is the most recommended thing. Children need to feel loved.
To transport Ryan as a baby, we were told to make a base of egg crate foam rubber and put it into a pillowcase. An actual pillow will work just as well if you don't have access to any foam rubber.
We had received so many cute clothes before Ryan was born, but most of them he couldn't wear. We found the best clothes for little babies is a button down or zipper type outfit. You don't want to be cramming their legs or arms into the outfit, which could possibly cause a fracture. Ryan was not able to hold his head or sit up, so we bathed him with a sponge on the bottom of the tub with just a little bit of water. We tried baby bath seats, but it was difficult as he was unable to sit up.
Another thing we had to be aware of was his head shape. Ryan's head was very soft from the start of his forehead, through the whole top of his head, and down the back of his head. If a child spends to much time on one side of his head it begins to take that shape. So we had to be constantly repositioning him using receiving blankets to prop him up.
Some kids get helmets that help with the shaping of their head. (You can check out helmets on Jonathan's web site listed below)
I feel very strongly that I know what is best for my child and I have the right to tell the Doctors "No, you can't do that with him." When dealing with medical staff, be sure to ask any & every question. For example: we were told that taking a blood pressure reading might fracture his
arm. The band that goes around the arm could get too tight and possibly fracture the arm.
My next subject is therapy. The first week we had Ryan home, we had people calling to set up appointments for therapy. The hospital contacts the county you live in and they set up the initial appointment with a group of therapists to see what your needs are.
In our county, it is called the Birth to 3 program. They provide services from the birth of your child all of the way until he/she is 3 years of age. Right now Ryan receives Physical therapy twice a week, Occupational therapy once a month, and speech therapy once every other week. This is a lot of therapy to manage.
Though the absolute best therapy for an OI child is water therapy. Water therapy is the best therapy of all because the risk of fracture is very low. A lot of kids learn their first steps in the water. I have to say the therapy we receive is great. I never did think I would see the day that Ryan would hold his head up, sit up by himself, backwards butt scoot, forward butt scoot, and most recently pushing up on hands and knees. Not to mention a little bit of crawling. Every little step is a huge accomplishment and I cannot emphasize how important physical therapy for an OI child is.
Another important step in our life has been pamidronate treatment. Pamidronate makes the bones harder. It takes the osteoclasts and stops them from taking away the old bone and keeps the osteoblast which build new bone. For awhile there Ryan was breaking every two months, but since the pamidronate treatment we have encountered a couple minor breaks/microfractures. I call it the miracle drug.
Changing diapers is different from a normal child. Never pick up from the legs. You should lift from under the butt and slide the diaper under. You also should never pick up a child from under the arms. It could cause a break in the arm/should area and even in the rib cage. We picked up Ryan for a long time by putting one hand under the head/neck area and the other hand behind his back/bottom area and picked him up as a unit.
OIparents@yahoogroups.com is the best on-line group for new parents and parents of young children. It was started by a Mother and Grandmother of a child that has OI. You can get on the list by contacting oiparents@gmail.com. You can read their story by going to Jonathan's web site listed here http://ceciliaykerstiens.tripod.com/babyjonathan/index.html. The site contains a lot of great newborn tips.
Thanks Michelle for all the information. If you have something you would like to add to Michelle's list, feel free to leave it in the comments below.
Posted by joeschmidt at 07:15 AM | Comments (0) | post to del.icio.us
Book Drawing Update
I'm going to hold off on the drawing for the two signed copies of Patricia Minor's Book "What Life Is Like Living With OI" until Monday night . I've posted a lot of information here over the last 12 hours and would like to give as many people as possible the chance to win a copy of her book. I will announce the winners Monday night at the same time I make the announcement of the iPod Nano winner.
To be eligible for the book drawing, all you have to do is leave a comment on one of the blogathon posts. There are quite a few posts asking for you input and knowledge, and also a lot of great stories as well. I'm sure the authors of those stories would love to hear your feedback.
To review all of today's posts, the 2006 Blogathon archive is available for your use. It is one page that has every single post listed in it's entirety.
Also, if you would like to checkout Patricia's book on Amazon.com, just click on her book's cover in the right side bar.
Happy commenting.
Posted by joeschmidt at 06:30 AM | Comments (0) | post to del.icio.us
What does OI really mean? What else does it say?
By Gregory Banks.
Literally translated, I think it says "Imperfect bone growth." But what else does it say?
Does it tell you my name? Does it give you insight into the life I’ve led? Can you define the nature of a person by the affliction he has? People look at you from afar, and sometimes very near, and focus their attention upon you as if your ailments are blindness and stupidity instead. They gawk and point, their blatant mannerisms and their subdued words issued on whispering lips screaming "Look at the freak!" at the top of voiceless lungs. It doesn’t matter to them whether you’re healthy and happy, loving and kind. Your body’s short, your chest a barrel, your bones like ancient china too delicate to touch. In their eyes you’re an oddity, a living, breathing museum piece right out of "Ripley’s Believe It Or Not."
But you are human, actual and whole. You remind yourself that you came into this world like any other child. Love is your purpose. Living is your right. You should be defined not by others, but by how you live life. You take and you give, you fall and then you rise. You appreciate the world with all encompassing eyes. But in the still of the night, as you lie quiet and alone, the very weight of Creation aches deep within your bones. Although you deny it, you know it to be true. Like Pinocchio, the desire to be "real" is ever part of you.
Gregory Banks is a regular contributor for Audacity Magazine, and authored two books with two more on the way. You can visit him at his website, www.wheelmansplace.com.
Thank you Gregory for your words.
Posted by joeschmidt at 05:55 AM | Comments (0) | post to del.icio.us
Living with OI
This next story was submitted by Marelise Prinsloo, who lives with OI, and is a writer for Audacity Magazine.com
"Living with OI" is something I didn’t thing about a lot while I was growing up. I am the only one in the family who has it, in my entire family ancestry there hasn’t been another like me. It seems even here, where I live, I am the only one. I never talked about "OI", my mother would just say "brittle bones" when I was little and try to explain to others. I grew up mostly thinking I was just like everyone else. I knew there were things my friends could do that I couldn’t, but that wasn’t such a big deal. It was only when I was grade 8 that it was clear I was disable and very much not like the normal people around me. That year my parents decided it would be best I attend a special school when I went to high school, since they figured I wouldn’t fit in with a normal high school. The decision proved to be disastrous, I finished one year in the special school and then went back to a normal high school. The problem with the special school was that the children there were too different than anything I had ever experienced.
I was brought up to be independent, to be ambitious and to work hard. The disabled children in that school failed year after year, even though the educational standards were way below average. They had no ambitions; they knew there was nothing waiting for them out there. When I attended that school, I didn’t just have OI, I was disabled. After that year, it took a while for my self-image to recover. I had to remind myself that I’m not like those kids, who are afraid to go outside, to confront normal people.
It has been a while since that year; I am now a qualified graphic designer and illustrator. I have a wonderful boyfriend and a good, normal life. I have OI, yes, but I am not disabled. I am in a wheelchair, yes, but I am not disabled. Disabled people are those who I left behind at that school. Hiding behind walls, afraid of what the world might do or say.
As I grew older, I wanted to find those who are like me. I found many of them through the internet and some of my good friends I found because of an online magazine called Audacity Magazine. For the first time in my life I spoke to people who were almost exactly like me, but living on the other side of the world. I became a contributing writer for the magazine and could express thoughts and emotions I had been having with thousands of other people. I realised I was not alone in this world; other people have the same fears and experiences as I do. I am not normal, but I am not disabled. I am somewhere in the middle, between two very different worlds.
In my country, Apartheid ruined lives by keeping different cultures apart by force and discrimination. The Struggle overcame in the end, but people are still putting the pieces of their lives together. Between the normal and non-normal worlds there is a different kind of apartheid, not upheld by force, but by socially indoctrinated beliefs. Beliefs that is peaceful in nature, but just as destructive. OI is just something that I have. Yes, it makes me different and sometimes I wonder how things would have been had I not had it. But it is the stigma of being disabled that I have had to struggle with.
Thank you Marelise for sharing your story.
Posted by joeschmidt at 04:45 AM | Comments (0) | post to del.icio.us
And now we pause our OI coverage to talk about an equally important cause
October 1st marks the start of Breast Cancer Awareness Month. Breast cancer is a disease, like OI, which currently does not have a cure. Our sister's in blogging over at a site called www.boobiethon.com are holding their 5th annual "Boobie-thon" where they encourage both women AND men to send in pictures of their covered and uncovered breasts to raise money for Breast Cancer research.
Here is some info from their press release:
Boobies. Although they come in all shapes and sizes (large, small, saggy and perky), they have one thing in common: The ability to develop cancer.
Even though there is no cure yet, the fifth annual Blogger Boobie-Thon is doing its part to make cancer a thing of the past.
From October 1-7, bloggers from across the globe can submit pictures of bare and covered breasts to raise money for breast cancer causes.
Founded in 2002 by Florida blogger Robyn Pollman (www.shutterblog.com,) the Boobie-Thon has grown into a well-known event, raising over $26,000 for breast cancer and blogger-charity causes, with over 1500 people contributing pictures. The event raised $9240 between October 1-8, 2005, with $1355 going to a secondary charity: The American Red Cross Hurricane Katrina Fund. The rest of the donations were donated to the Susan G. Komen Breast Cancer Foundation.
So if you get a chance, check out their site, and maybe consider donating (in whatever way you see fit) to their cause.
I think we owe it to the women in our lives to help put a stop to breast cancer. And now, back to our regularly scheduled blogathon for OI.
Posted by joeschmidt at 04:14 AM | Comments (0) | post to del.icio.us
Stories From The OI Community: Rick's Story
Rick has type 3 OI and loves to watch live auto racing. He was kind enough to share a bit of his life with us:
I turn 50 years old in two months. I have yet to meet anyone with OI "3" at this age. Never did I imagine to be here still. I owe most of why I am here to my mom and my intense desire to be around Auto Racing. I watch and attend racing events almost every week. I have been to 56 racetracks across the US and Canada.
Without my desire to get to the racetrack... to see cars..to meet people, I am not sure I would have fought so hard to regain my health after so many operations and fractures.
All my life I have been going to racetracks. Ninety-nine and nine/tenths of the time I am by myself. I used to invite people, mostly woman to come with me.. but now I only do once that in a while.
Formula One cars have been a goal of mine since I was sixteen years old. My Mom had been getting noticeably more and more nervous every-time I went away far to an event. When my sister became sick in 2002 I put-off going to the race. Them my Mom became sick a bit later and I forgot all about this goal.
In 2005 both my Mother and Sister passed away. My sister, who also had OI died from we believe a blood clot from a broken bone. My Mom developed Alzheimers late in 2002, and passed 7 months after my sister Karen.
No longer worried how my Mom would feel about my trip I began making plans for Canada. During the trip to Montreal, Canada I was a bit nervous. Over 600 miles of driving and across the border. I was headed for the Canadian Grand Prix at Circuit Gilles Villaneauve.
This picture is of me in one of the Wheelchair areas of the track. Formula One racing is special when you see how badly disabled or handicapped a lot of the spectators were in that section. I go to a ton of Nextel Cup races and hardly ever see a spectator that can't wheel themselves. I sat next to three people who had oxygen and a man who had Cerebral Palsy and was Blind.
I was one of the luckiest people in the bleachers that day!
I had a super time and felt for the whole time so free from discomfort. It is these "Days" that keep my life so special.
Thank you Rick for sharing your story with us.
Posted by joeschmidt at 03:59 AM | Comments (1) | post to del.icio.us
Ask the Readers: What other OI related charities are out there?
We've been mainly focusing on the OI Foundation and the work they do throughout this entire blogathon. But now I'd like to take a chance and ask you to submit other OI related charities. Here are two that I've found:
The Miracle Michael Fund - The Miracle Michael Fund golf outing is held annually in memory of Michael John Shultz. “Miracle Michael” was born with severe OI and bravely battled complications from this disorder throughout his eight months of life. Despite more than 100 fractures, Michael’s smile stands as a symbol of how powerful the human spirit can be, despite the obstacles we are facing.
The Tiny Bones Fund - A tax-deductible donation to the Tiny Bones Fund can be made in two different ways. You can mail checks or money orders payable to: University of Nebraska Foundation to 8712 W Dodge Road, Suite 100, Omaha, NE, USA 68114.
Please include a note stating that your donation is for the Tiny Bones Fund. Or you can call 402-595-2302 to make a credit card donation (7:30am to 5pm CST). Funds will be used to cover costs of transportation, treatments and surgeries, research and teaching.
Any others? Please submit your favorite OI related charity or benefit in the comments below.
Posted by joeschmidt at 03:34 AM | Comments (0) | post to del.icio.us
OI From a Doctor's Point of View
Omaha is lucky to have two world class medical facilities at it's disposal. And it may be suprising to some, but it is home to some of the best doctors and state-of-the-art equipment when it comes to OI. I contacted Dr. Horacio Plotkin, who is Assistant Professor of Pediatrics and Orthopedic Surgery at the University of Nebraska Medical Center and Medical Director for Metabolic Bone Diseases Clinic at Children’s Hospital, and asked him to tell the story of how he became involed with OI. Here are his words:
My relationship with OI started almost 20 years ago, when I was rotating by neonatology as part of my pediatric residency. A child with extremely severe OI was born, and there was nothing we could do to help him. He passed away a few hours later. I’ve realized then that I had a dream, and that was to help children with OI. That lead me to avidly read any article I could about pediatric bone diseases. Including rickets that unfortunately is very common in South America.
When residency was over, a fellowship in Pediatric Endocrinology at the National Pediatric Hospital of Buenos Aires followed. There, Dr. Hernan Mendilaharzu, an "old-fashioned" doctor with an incredible clinical experience, guided my first steps in the amazing field of hormones and receptors.
In 1993, the Metabolic Research Institute of Buenos Aires was searching for a pediatric endocrinologist, to conduct a research program. The aim was to find normal values for bone density in young population. I got the job, and the result was a three year fellowship, during which I have published seven papers, and made 30 presentations at scientific meetings.
I also became a member of the Pediatric Working Group Committee of the American Society of Bone and Mineral Research (which I chaired in 2000). The fellowship included a three-month rotation in the Shriners Hospital in Canada. While in Canada, I was invited by Dr. Andrew Stewart to coordinate a clinical research project at Yale University School of Medicine, in Connecticut. The subject was Use of Parathyroid Hormone Related Protein (PTHrP) for the Treatment of Postmenopausal Osteoporosis. A little far away from the children that I was used to work with, but still a great experience, working with one of the foremost authorities in the field of Endocrinology.
As a part of our work together, we wrote a chapter for a book about Clinical Endocrinology, and published the results of our research. In August, 1997 I arrived in Montreal on a warm sunny day. It was not a reflection of the crude winter that would come later. But the warm people of Montreal made it nice to be there, even in the middle of the worst snow storm. My main project at the Shriners was related to the treatment of children affected with severe osteogenesis imperfecta using a new bisphosphonate, alendronate. The study included 15 Shriners Hospitals in USA and Canada.
I have also been involved in the treatment of infants and children with pamidronate, another bisphosphonate, and in the follow-up of children with different metabolic diseases of the bones. In June 2002, I started in a new position at the University of Nebraska Medical Center and the Children's Hospital of Omaha, Nebraska. These institutions, with state-of-the-art technology and incredible personnel, are amongst the best in the world. We have started the OI and metabolic bone diseases clinics.
The multi-disciplinary approach is the basis for the clinics, including OT, PT, orthopedic surgery, social worker, audiology, nutritionist, psychologist, amongst others. I am now Assistant Professor of the University Of Nebraska School of Medicine and Director of the Metabolic Bone Diseases clinic at Children's Hospital. We have children coming from 27 states in the USA, and places as far as Mexico, Spain and Romania to seek treatment and evaluation with us.
I have written 6 chapters in books and published 46 articles related to my field of study. We have developed a low-dose protocol for the use of pamidronate, with very promising results. I have also published a new classification of OI and related disorders, as I feel that the classic classification in 4 types underscores the complexity of this condition.
After many years reading about osteogenesis imperfecta (and the lack of an effective treatment for it), I am very proud to be part of this amazing adventure of helping children, relieving their pain, increasing their independency and physical activity, and drawing smiles on their families. They came to Omaha and find a friendly team, working together, with the simple aim of making those children a little bit happier, every day.
Thank you Dr. Plotkin. It is truly amazing that we have such talented professioanls right here in our community. If you would like to read more about Dr. Plotkin and the work he does, check out his website www.geocities.com/dr_plotkin/.
Posted by joeschmidt at 03:01 AM | Comments (0) | post to del.icio.us
Stories From The OI Community: Amelia's Story
Amelia has type 3 OI and was kind enough to send us her words of determination:
My name is Amelia and I have type 3 OI. I have had hundreds of fractures in my life and many of surgeries. When I was in grade 7, I had a brain tumor the size of a hardball removed from my head. Just when I thought it was gone for good, it came back again the summer after grade nine. Since then I have had cancer treatments to make sure it won't come back.
These events have had a big effect on me, but in no way have slowed me down in reaching my goals. After I graduate, I'm going to go to University to become an Astronomer. One day, I'm going to discover something great, and nothing is going to stop me.
Thank you Amelia
Posted by joeschmidt at 02:21 AM | Comments (4) | post to del.icio.us
There was a powerball winner tonight but it wasn't this blog
If you recall from an earlier post I had mentioned that had I won tonight's $15 million jackpot I would give 10% to the OI Foundation. Well I hate to be the bearer of bad news, but this blog will have to go to work on Monday.
Here are tonight's winning powerball numbers:
6 15 30 32 39 and the powerball was 5.
Compare them with my numbers:
Someone out there actually did win tonight, as it happens this is the third winner in as many drawings. Well, at least we tried.
Posted by joeschmidt at 01:09 AM | Comments (0) | post to del.icio.us
