Please help us find a cure for JDM - Juvenile Dermatomyositis. A 15 year old named Cole Fleck recently died from this horrid disease (read more here). Kids shouldn't have to take so much medicine every day. They should be able to play and participate in sports with their friends. Please vote every day on the Pepsi Refresh challenge. The top 2 charities win $250,000 for their cause. There are three ways to vote each day, and it only takes a few minutes to make sure a huge difference.
Please vote today and everyday. You can vote THREE times daily for Cure JM:
(1) Send Text Vote to Pepsi (73774) Type: 100850 to vote
*Standard text messaging rate apply.
(2) Use the Facebook app:
http://apps.facebook.com/pepsirefresh/idea/view/id/5cc97f04-a2e5-102d-b2ee-0019b9b9e205
(3) Vote directly from the Pepsi site at: http://www.refresheverything.com/makejmamemory
Or preferably, vote for our entire Kids to Win team at: Kids To Win (all items that will help kids)
http://www.refresheverything.com/search/?q=Ouachita+Mokena+PKU+Mayhood+Chloe+%22highest+infant+mortality%22+%22Seeker+Springs%22+%22Rett+Syndrome%22+%22Juvenile+Myositis%22+%22icing+smiles%22+&ic=0&im=0&iir=true
Sunday, August 22, 2010
Friday, August 20, 2010
The Medical World and e-prescribing
Since I spend my career trying to create the best medical record software in the world, I am generally a huge proponent of e-prescribing and software in general. I also tend to believe that medical professionals are for the most part excellent people who try to help the world be a better place.
We have had some medical issues lately that have called for more medical care than normal. I am happy to report that for the most part, the people have been amazing and awe inspiring. However, we have also seen the frustrating side. Sometimes it is very difficult to get someone on the phone - even just to make an appointment! For one doctor, we have been waiting to get in since June and the appointment is September 30th.
While our family doctor and the specialists have all been fantasitc and have bent over backwards trying to make sure we hvae the proper care, I have to say that the power of the internet is in full force. I have gotten SO much help from message boards and reading online, and I have even picked our doctors that way for several of the visits. It is nice to know the experiences other patients have had, and it helps to find the experts in rare conditions. We have had other people contact us by email just offering to lend an ear. Wow, when you are really struggling, I can't tell you how much you need to have that faith in humanity restored.
I have also been reminded of how much people are afraid of illness. So many people have just kind of disappeared. I think people really struggle with how to act when something is wrong, and it is a depressing thing. I will tell you that the best thing that you can do when someone is going through something is to ask and to just be there. Don't be afraid to ask or to talk about it. Trust me. They are thinking of little else anyway, and they will appreciate it. Otherwise, you sit there trying to pretend like these other things in life are important. They might have been important a few days, weeks, or months ago. But, there are a lot of things that change your perspective on life and illness is one of them.
As for e-prescribing, I have been pushing it for a long time. I also get to hear providers complain about it if they have problems. One of the common things I have heard at times is the provider saying that the "prescriptions don't get there." Whenever we research these types of issues, it seems to be related to timing or to the pharmacy not looking in a different place. Well, I have gotten to be on the other side now. It is SO frustrating to KNOW that the provider sent the prescription because you WATCHED it. However, you are standing in front of the pharmacist who is telling you that it is not there. How can that be? The first time that it happened, I thought it was just a mistake or something. The second time, it was with a different physician at a different office. The third time, I asked for a back up prescription on paper and I needed it. The fourth time, it was already filled and ready as I got there. I thought I heard angels singing then, but unfortunately 1 out of 4 times isn't a great result.
Accuracy is even scarier. I recently went to walgreens to pick up a prescription for a pretty heavy drug. After I waited for 15 minutes, I go to get it. She hands me a box of CALCIUM in a BOX that has been placed inside of a prescription bag. I told her that it was not a prescription for calcium but instead the other medication. She tells me that it is the generic form. Ummmmmmm....what do you even say to that? I asked for the pharmacist, and I thought she was going to faint. She got me the correct prescription. I am not sure I want to go back there. It was really frightening.
This has all left me to be proud and afriad. No wonder people have such a weird impression of our medical care. We have such amazing and talented people doing such amazing and talented things. However, it is these odd items that give it all a bad name. I truly wonder how people without family members who have health care backgrounds ever navigate a serious illness. The care, the insurance requirements, and the bills are a lot to figure out. Of course, if you have United Healthcare, you also have to deal with the annoying, "your claim has been placed on hold until you verify that the patient does not have other insurance." Ok, the first time, I was accepting. The second time, I was annoyed. The third time, I was angry. The fourth time was ugly. This was all within a month. What an awful way to do business! I used to like them.
We have had some medical issues lately that have called for more medical care than normal. I am happy to report that for the most part, the people have been amazing and awe inspiring. However, we have also seen the frustrating side. Sometimes it is very difficult to get someone on the phone - even just to make an appointment! For one doctor, we have been waiting to get in since June and the appointment is September 30th.
While our family doctor and the specialists have all been fantasitc and have bent over backwards trying to make sure we hvae the proper care, I have to say that the power of the internet is in full force. I have gotten SO much help from message boards and reading online, and I have even picked our doctors that way for several of the visits. It is nice to know the experiences other patients have had, and it helps to find the experts in rare conditions. We have had other people contact us by email just offering to lend an ear. Wow, when you are really struggling, I can't tell you how much you need to have that faith in humanity restored.
I have also been reminded of how much people are afraid of illness. So many people have just kind of disappeared. I think people really struggle with how to act when something is wrong, and it is a depressing thing. I will tell you that the best thing that you can do when someone is going through something is to ask and to just be there. Don't be afraid to ask or to talk about it. Trust me. They are thinking of little else anyway, and they will appreciate it. Otherwise, you sit there trying to pretend like these other things in life are important. They might have been important a few days, weeks, or months ago. But, there are a lot of things that change your perspective on life and illness is one of them.
As for e-prescribing, I have been pushing it for a long time. I also get to hear providers complain about it if they have problems. One of the common things I have heard at times is the provider saying that the "prescriptions don't get there." Whenever we research these types of issues, it seems to be related to timing or to the pharmacy not looking in a different place. Well, I have gotten to be on the other side now. It is SO frustrating to KNOW that the provider sent the prescription because you WATCHED it. However, you are standing in front of the pharmacist who is telling you that it is not there. How can that be? The first time that it happened, I thought it was just a mistake or something. The second time, it was with a different physician at a different office. The third time, I asked for a back up prescription on paper and I needed it. The fourth time, it was already filled and ready as I got there. I thought I heard angels singing then, but unfortunately 1 out of 4 times isn't a great result.
Accuracy is even scarier. I recently went to walgreens to pick up a prescription for a pretty heavy drug. After I waited for 15 minutes, I go to get it. She hands me a box of CALCIUM in a BOX that has been placed inside of a prescription bag. I told her that it was not a prescription for calcium but instead the other medication. She tells me that it is the generic form. Ummmmmmm....what do you even say to that? I asked for the pharmacist, and I thought she was going to faint. She got me the correct prescription. I am not sure I want to go back there. It was really frightening.
This has all left me to be proud and afriad. No wonder people have such a weird impression of our medical care. We have such amazing and talented people doing such amazing and talented things. However, it is these odd items that give it all a bad name. I truly wonder how people without family members who have health care backgrounds ever navigate a serious illness. The care, the insurance requirements, and the bills are a lot to figure out. Of course, if you have United Healthcare, you also have to deal with the annoying, "your claim has been placed on hold until you verify that the patient does not have other insurance." Ok, the first time, I was accepting. The second time, I was annoyed. The third time, I was angry. The fourth time was ugly. This was all within a month. What an awful way to do business! I used to like them.
Pepsi Refresh
Without going into all the details, I need to give a HUGE shout out to Pepsi. Did you know that each and every month they are donating 1.3 Million dollars. Yes, that was a MONTH and MILLION in the same sentence. If you know me at all, you know that I am a Diet Coke addict. I love my diet coke. I try very hard to not have too much, but I LOVE it.
However, I am so impressed with the Pepsi commitment to communities and charities, I am hereby switching my purchasing to Diet Pepsi. Not that I won't drink Diet Coke, but for my home drinking, I will be buying Pepsi at least more than Coke.
CureJM is an organization that is trying to find a cure for a childhood immune disorder that is called Dermatomyositis. They are currently in 2nd place to win a grant from Pepsi for $250,000. I am sure that will go a really long way. The top two items win, so they just need to hang onto 2nd. The first place slott is to raise money for Rett's syndrome. Pepsi lets people vote and they fund the ideas. Some are community parks, classes and camps. Others are for medical cures, etc. What a fantastic idea, and I want to THANK PEPSI!
However, I am so impressed with the Pepsi commitment to communities and charities, I am hereby switching my purchasing to Diet Pepsi. Not that I won't drink Diet Coke, but for my home drinking, I will be buying Pepsi at least more than Coke.
First Week of School DONE
When I was driving back from the biodome (known as the Gaylord Hotel), it was POURING rain. I could barely see in front of me, and I was SO glad to make it home. While I was gone, Mike decided that he really need a pick up truck, so we are now the proud owners of a black F150 truck with two seating rows in the cab. YEEE HAW!
Sunday, August 15, 2010
Weekend Fun
I got to ride my bike for 54 miles on Sunday, and I ran for 8 on Saturday. This heat is KILLING me. Man. BRUTAL.
Morgan and I saw Eat, Pray, Love. I thought it was pretty good. Not fantastic, but nice. I did giggle about some of the India stuff since I will be going there soon.
We got school supplies and prepared for the first week of school. Bye Bye Summer!!!
Morgan and I saw Eat, Pray, Love. I thought it was pretty good. Not fantastic, but nice. I did giggle about some of the India stuff since I will be going there soon.
We got school supplies and prepared for the first week of school. Bye Bye Summer!!!
Friday, August 13, 2010
Atlanta Meetings
Stayed at the W in Atlanta again. The funny thing is that they had a letter for me that was sent there while Morgan was at camp in JUNE. Too funny. We had good meetings, and I enjoyed seeing Krishan and Phil again.
Tuesday, August 10, 2010
7th Grade Orientation
Today, Morgan had 7th grade orientation. Wow, how did we get to 7th grade already?????? She was trying on clothes, putting on make up. Wow. I am not ready for all of this - slow it down!!!!! So, we get to the school, and of course the ONLY line in the entire gym was for 7th grade A - H. Really? I am not sure what the staff was doing, but it was SOOOOO slow. We FINALLY made it to the table, and then they say that we have to go to the nurse because of immunizations. Morgan can't have them right now, so we had to go back to the doctor to get the form. He had it filled out, but I didn't know that you had to have it to even pick up your schedule. Man. We went to pick it up, and came back. Thankfully, there wasn't a line. We get the schedule. Of course, Mogan has PE which she cannot take. We go to try to find out how we fix that, but they said that the new Florida 22 students in a Middle School class law is really messing up their scheduling. So, we will have to wait. We got the supply list, and we got to see one of her teachers. Whew. Can anyone teach me how to SLOW down this growing up thing?
Sunday, August 8, 2010
Back to Biking and HOME!
Today, Mike and I rode for 40 miles on our bikes. It was so nice to be back on my bike!!! We also saw a movie and just hung out. Morgan has her first home visit tomorrow, so we were preparing for that.
Saturday, August 7, 2010
NY Trip
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| Morgan and Tori in First Class |
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| Benjamin's Steakhouse |
Morgan and I headed to NY City this week for several personal reasons, but we also had a LOT of fun. Tori came with us, and we met up with lots of Morgan's friends one day for some shopping. We managed to see the Statue of Liberty and Ellis Island, Shopped ( at Hollister - 5 floors!!, Abercrombie, Victoria's Secret, American Eagle, American Girl, and many, many other local places and street people), saw Lion King, went to the top of the Empire State Building, toured time square, went to Ground Zero, and ate at some fabulous restaurants. Morgan also fell in love wtih NY pizza.
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| View of New York City |
We ate at Benjamins, Gallo Nero, and Tao (well, we also ate at Applebee's but we won't talk about that). Benjamin's had an amazing salad with crab on it, and the steak was good too. The sauted spinach was some of the best I have ever eaten. Morgan gave the steak an A+. Gallo Nero was very yummy. I had a ravioli dish, and Morgan had salmon that she said was very good. We had some great wine, and they brought out a fantastic desert for Tori for her birthday! Tao was very good as well. Morgan had lo mein noodles, and I had shrimp. They had fortune cookies with pudding in them for dessert. Pretty interesting idea. The atmosphere was great.
We loved Time Square. We stayed at the Hilton by Times Square, and it was a great location. We rode the "pedi cabs" where the guy on the bike pulls you. We liked that. We got pretty familar with the avenues and streets, and we could find our way around pretty well. We went to Serendipty for some frozen hot chocolate, but there was a really long wait. Next door, some place had become a knock off I guess to get the business when there was a wait. Smart people. We had their frozen hot chocolate, but Tori said that it wasn't as good as Serendipity. Next time.
We really liked the Lion King. We even got to meet Mufasa after the show. Unknowingly, we asked him to take our picture. He was so super nice and stopped to talk to us and took our picture. He rocks!
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| At Tao |
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| On Top of Empire State Building |
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| On Top of Empire State Building |
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| On Top of Empire State Building |
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| On 102nd Floor of Empire State Building |
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| On 102nd Floor of Empire State Building - Hey Tori, watch the elevator! |
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| At Empire State Store |
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| on 102nd floor |
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| Limo took us back from Empire State Building |
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| Limo shot |
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| Times Square |
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| Girls With Holister Model |
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| Champagne and Stawberries - Happy Birthday Tori! |
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| Statue of Liberty |
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| We met Mufasa after the show (he is awesome!) |
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| World Trade Center Site - Ground Zero |
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| Bell of Hope at Ground Zero |
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| Pepsi Refresh Vote Today |
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| Tori's Birthday Dessert |
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| At Lion King |
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| After Lion King |
Sunday, August 1, 2010
Nashville/20 Year Reunion
I got back to Nashville Wednesday night, and I had a great Thursday, Friday, and Saturday with the family. It was so good to hang out with mom, Dad, Morgan, and Mike. Thursday, we hung out at Grams and Papa's. Morgan and Grams did activities while I worked. For dinner, we went to Sperry's for dinner. I had never been there, but it has a long time reputation in Nashville. I thought it was amazing how it is in a strip mall (well the new Cool Springs one), but when you open the door you would never imagine that you are in a strip mall. Crazy. I had steak that was really, really good, and the salad bar was really nice as well. Two thumbs up!
Friday, I worked at home again at Grams and Papa's. After a crazy day, we went to a mexican restaurant. I had forgotten how nice it is to be able to choose from SO many different Mexican places. We ate at Las Palmas. Man, it was good to be at a "real" Mexican place. YUM. Margaritas. YUM food. YUM. :)
After dinner, I met some high school friends at Boscos. It was fun to catch up with John, Audrey, and Adam. Amy J came later that night, and we ended up closing Boscos, and then we went across the parking lot to Losers 2 which had live music. We thought it was hysterical that it was 1. A bar named Losers and 2. It was the second bar named Losers. Too funny. We had fun. The band was pretty good, but it was REALLY loud.
Saturday, i got up and ran my 6 miles, and then we went to a picnic off of Concord Rd. It was nice to see my old high school classmates, but it was also a little weird. I was surprised at how many still lived there. That afternoon, I took Morgan to see Amy J's horse, pony, and donkey. We had so much fun getting to meet Anna and Harrison. They are adorable kids, and that Anna is a riot. Morgan thought Harrison was cute. :) We laughed that the donkey's nickname is Obama. :) Morgan rode Buster, and we petted Sugar. Amy was giving Morgan tips on how to get a horse from your parents. Bad Amy, Bad. It was a great time.
Saturday night, the Brentwood High reunion was held at the Marriott. I can't believe it has been 20 years. CREEPY. It was fun to see everyone. It seemed like we had a LOT of lawyers. Lots of kids. Somehow, I ended up with the most kids award. I thought that was hysterical since I only had one of them. Oh well. They went by how old the oldest was, and Mike was too thrilled to yell out 16. Too funny. I even got a ribbon.
Sunday, we flew back home. I had been gone for 10 days, and it was so nice to get home. However, I really love Tennessee and my family. I am so glad I got to spend some time there. LOVE my Grams and Papa (aka Mom and Dad).
Friday, I worked at home again at Grams and Papa's. After a crazy day, we went to a mexican restaurant. I had forgotten how nice it is to be able to choose from SO many different Mexican places. We ate at Las Palmas. Man, it was good to be at a "real" Mexican place. YUM. Margaritas. YUM food. YUM. :)
After dinner, I met some high school friends at Boscos. It was fun to catch up with John, Audrey, and Adam. Amy J came later that night, and we ended up closing Boscos, and then we went across the parking lot to Losers 2 which had live music. We thought it was hysterical that it was 1. A bar named Losers and 2. It was the second bar named Losers. Too funny. We had fun. The band was pretty good, but it was REALLY loud.
Saturday, i got up and ran my 6 miles, and then we went to a picnic off of Concord Rd. It was nice to see my old high school classmates, but it was also a little weird. I was surprised at how many still lived there. That afternoon, I took Morgan to see Amy J's horse, pony, and donkey. We had so much fun getting to meet Anna and Harrison. They are adorable kids, and that Anna is a riot. Morgan thought Harrison was cute. :) We laughed that the donkey's nickname is Obama. :) Morgan rode Buster, and we petted Sugar. Amy was giving Morgan tips on how to get a horse from your parents. Bad Amy, Bad. It was a great time.
Saturday night, the Brentwood High reunion was held at the Marriott. I can't believe it has been 20 years. CREEPY. It was fun to see everyone. It seemed like we had a LOT of lawyers. Lots of kids. Somehow, I ended up with the most kids award. I thought that was hysterical since I only had one of them. Oh well. They went by how old the oldest was, and Mike was too thrilled to yell out 16. Too funny. I even got a ribbon.
Sunday, we flew back home. I had been gone for 10 days, and it was so nice to get home. However, I really love Tennessee and my family. I am so glad I got to spend some time there. LOVE my Grams and Papa (aka Mom and Dad).
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