OT September Chit Chat

[agate]

Jeanie, I hope that everything possible is being done to make Jamie more comfortable. I know you're doing everything you can and then some.

Peg, I'm shipping you some more hay. I know how much you enjoy working with it!

I got out the winter clothes and have been washing them today. That will go on for a few days because some need hand washing. Then I'm all set to stay warm.

It's been in the 40s at night and the first frost here can be as early as Sept. 26. The days are great--around 70 and sometimes sunny.

[Virginia]

Jeanie, sorry about this latest development with Jamie. I just hope that she does not suffer from now on. She has been through so much, and all of the rest of you have also. Just don't know how you have held out to do what you have done. You are a strong lady.

Gary, when Vicky declined the potatoes what she forgot is how much better "just dug out of the ground" potatoes taste than the ones you get in the store. I use to buy them when I was still able to go to the farmer's market. What a difference.

Agate, you are just too smart. Reminds me that I need to do some things to get myself ready for winter, but I am a little on the lazy side lately.

Well, getting ready to go meet brothers and their wives for dinner.

[Cat Dancer]

Jeannie, I'm so sorry about Jamie. I hope the hospice program is a good one, and her pain and suffering eased. You've done so much to help the family. I hope you get some rest, now, and take care of yourself.

I'm off to the wound clinic on Monday. They haven't seen my pressure sore for two months. I'm hoping they'll be pleased .. the wound is still there, but greatly reduced, and it seems like in the last 6-8 weeks it has accelerated healing. Then Tuesday I get to go back to town (45 minutes away) to get cataract surgery on one eye. Then Wednesday back to town again to have a follow up visit with the eye doctor. Always something. I'm hopeful that I'll get some improvement in vision. Dealing with macular degeneration, too, so there are no guarantees, but any improvement will be good.

[Jeanie Z]

:) Andy called me back and said Jamie does not want any company. Andy is even going home. The nurses there have been very good. They immediately started an IV and gave her anti nausea med by IV and pain med by IV. Andy said she went to sleep. He said he will see how she feels tomorrow.

Thank you all for being here to vent to. Jeanie :)

[stillstANNding]

Jeanie,

God bless you all.
Get some rest now.

ANN

[agate]

About the Facebook "dislike" button, I found an article about it, indicating that it will be introduced on a trial basis.

Only registered and activated users can see links., Click Here To Register...

[Howie]

If it's used to express sorrow, say when a pet dies, that's fine. But I fear it will be used on a post about something positive just to start trouble, then that person will always post a "dislike" on that persons every post, and on and on, and the war begins. We will see how it goes over. I think it's fine as is.

Wouldn't a "sorry" button work better?

[Cat Dancer]

Sorry button would be good.I discovered a cool Facebook feature: blocking someone.you don't see their posts, they don't see yours. Troublemakers be gone!

[SuzE-Q]

Jeanie, I'm so sorry. Jamie has put up an incredible fight.

Good luck with wound care and cataract surgery, Cat! Hope it goes well.

[Cherie]

Jeanie,
So sorry to hear how badly Jamie is doing. It does not sound good and she sounds miserable.

Home safely from Bethesda. I really did not quite know what to expect from this conference the title was so "out there". The first day's classes were to teach us the basics of 4 types of questionnaires and study designs and how to decide what works best in a given situation with specific patient populations. The second day we had a number of researchers talking about the need to get patient input into the study process and getting the potential "end user" voice into the making and distribution of a drug or device. Then we broke into work groups and the population of the conference had us at 10 tables with 8-9 at a table with one patient or advocate at a table with the researchers and docs and folks from the FDA. We tore up the current study design and path to getting to approval and put the patient driving the process and at the head of the team and shortened the process from 15 years to 5 or 6 years using shared data, removing all of the "silos" of proprietary information and instituting cooperation among the researchers and regulatory agencies. I made a bold move as the final presenter of the afternoon and after stating that our table had decided the current model did not work well, I ripped up the paper they had given us with a diagram of the model and said that the patient, not the researcher, needs to drive the research. The final morning, I got a clear reprimand from the person who had coordinated the program who said that what I had torn apart in front of the group was the gold standard of research design that had been put together by several folks in the room who were footing the bill for the conference and I needed to step back and be quiet.

I felt horrible Friday morning knowing I had overstepped without intending to and had upset the apple cart. That morning we had patient advocacy groups present and talk about the need for patients and their advocates (families and close circle of supporters) to have a strong voice in the process. After lunch we broke into work groups. There had been an artist working throughout the conference depicting what the presenters had been saying and what the discussion groups were presenting. He took the floor at the start of the afternoon sessions and noted that the research concept and protocol had been "blown out of the water yesterday in group discussions and had been redrawn as a result and proceeded to explain the graphic on the wall which put the patient and their support group in the center of the picture with researchers, docs, payors, advocacy groups all around the patient for support not pushing the patient in any direction. Then he said, "yesterday, one table who presented at the end was clear that the other groups were right and the model did not work. the spokesperson for that able made a bold move and tore up the design of the current research model saying it was broken. Is the person here who did that?" I raised my hand fully expecting reprimand but got a round of applause instead! The entire afternoon was spent redrawing, redesigning the research model with the patient at the center and groups like FDA, Big Pharma and Advocacy groups working together to reduce cost and shorten time to market. It was humbling. And gratifying. Another advocate passionately declared, "I see all of you here texting and answering emails and not really giving your full attention to the speakers and I have to say I am so very disappointed in you and your lack of professionalism and presence on this very urgent and important topic. shame on you!" We, the patients and parents, won the day! We won the conference. Design was rewritten for those who would use it. The newly recommended Commissioner of the FDA was there and he is so approachable and human and not of the mold that others preceding him were. I think we will see a change in future study design, cost and time to market under his guidance and a melding of time frame with European and world-wide markets (US is SO FAR BEHIND the rest of the civilized countries in approval and oversight)

I am exhausted but it was safe travel and a really productive time at the conference.

[Gary]

Cherie......WOW!!!!

I think what we need is a "Snack" button. Whenever you click on it out pops your favorite snack food, its something that every one would like!

[nuthatch]

Wow Cherie, to be honest, I don't really understand what you're talking about, but it sounds like you got their attention! Kudos. It's all beyond me!

Jeanie, prayers for you and your family, it's been such a long, hard struggle.

We finally became first time grandparents today to a beautiful healthy baby girl. We're all so thrilled. Baby, Mom and Dad are all doing great, and hopefully sleeping soundly after a very long, productive day!

[stillstANNding]

Cherie, Wow! is right. Most if us hope we have enough energy to cook dinner at the end of the day!

Jeanie, I think about Jaime and Andy. It is not fair. I would welcome a miracle for her. The others are right, take care of yourself and get your nutrition and rest.

I left my job and went on disability after a particularly bad exacerbation after my sister died of a rare sarcoma at 48. I know to well that emotional upheavals do affect us.

Today, I went w my husband to our neighborhood Open Studios. We went to 3 group shows. The second was at the church we were married at. It was wonderful to go into the rooms where the reception was. We bought each other beautiful coffee mugs. The inside of mine is a deep rose pink glaze called, Heaven's Gate.

At another booth in the yard- near where our reception line had been- Husband bought me a gorgeous necklace. Artsy, with 6 colors.

Now resting on couch. You know how it is. Fortunately we have leftovers for supper. ;-)

Gary, I'll take your extra potatoes. Peg, too much hay or not enough?

Virgina, Vicky, Renee, Sally, Howie, Parsi, both Joans et al., may you have a cool week w extra energy and chocolate, of course.

ANN

[Jeanie Z]

:) Hi everyone. I did not go to see Jamie yesterday. I was exhausted. I laid down at 3 PM got up at 5 to eat leftoverss and back to bed. I did not get up today until 11 AM. Usually I sleep an hour or two and up and back for another hour or two but last night each time I slep several hours and was still sleepy so back to bed.

Jamie is being well taken care of at hospice and I need to get myself restored enough to be able to help her when she needs more help. I talked to Jamie's mom in the evening when I got up to eat and she said Jamie was sleeping. Andy even went home to rest.

Today I am going to stay home again and maybe go this evening if I get another nap. Jeanie :)

[Virginia]

Jeanie, glad you are getting a little rest yesterday and today. This is an ordeal that no one knows how long will last. I just want the best for you and Andy and his Mom and peace for Jamie. Prayers are being said here.

Cherie, I am another WOW! Much of that was beyond me. I did go back and read it again and found that some of it started to jell a little. However, I have nominated you for something in another post, so please read the one on the Greedy Drug Companies. See if you can work this into your "leisure" time.

Cat, hope cataract surgery went well. Hope you can see real good out of the eye that was done. Let us know.

Nuthatch, congratulations!!! That is a really BIG deal. First time GP. I know you all are a very happy family and you can view your little one on Skype.

Ann, I am with you - it really is a big deal to get the energy to cook dinner. If I cook a really good meal one day it better last for several days because I am not able to do it every day.

We have not heard from Sally and I am wondering if anyone knows what is going on. I am so concerned about her. Would love to see her "safely" installed back in her own home. I think that is probably what all of want for Sally. I miss her.

Agate, have you been a little quite lately. I have seen some post, but it doesn't seem like a lot.

Suze-Q have you got that job figured out yet? Are you in the learning process now? Good luck!

Gary, I guess I am going to have to move there so I can get all kind of fresh vegetables. I do love them. We have them - they are just located too far and it is too much of a walk after I get there.