oh wow ! That sounds great !
Well survived, I have a lot to report.
Now who wouldn't like a pre-infusion game of Apples to Apples??!
I am so jealous
Tana's cabin counselor was a Division 1 Volleyball player who came up from California. (She also got infused but with a combination of Steroids and IVIG (immunoglobulins) as well as Rituxan her Polymysotis was out of remission. Another 14 year old had just flown up fro Idaho Falls because the day befkeore camp she got got cleared following her kidney transplant from dermatomyositis complications. She was so excited I though she'd pop.
These kids were amazing and although its not ever appropriate to compare "disease levels" I have never seen that many people in one group with that much disease. I have never seen a group of sick folk that where unless you wondered why they were disappearing periodically and asked where they were going you would have no idea they were severley ill. Not one complaint, excuse about their disease in three days. No worries about the future (well except the Volleyball player who was concerned what her coach might say if the next camp was held on aweekend they didn't have a bye. None of them missed the class in parkour (free running -www.youtube.com/watch?v=wfBuroUgthI ) and all of them tried it. I thought it was just video games, these kids were doing it for reals
Dr Peggy and I talked a lot mostly about an old job of mine which is her new job. (WAMI Washington, Alsaska, Montana, Idaho medical School Coop. That's why I know so many people. Our graduates have applied for residency positions all over the country so I have gotten to know a lot of these people running those programs over the years).
I'm sorry there isn't much new to report beyond reclassification of some diseases including Sjogren's and FMS to better define their role as as symptom trigger's rather than separate diseases (in some not all cases.) Most "current" docs are already doing this and consequently armed with the internet to support them unhappy patients are flooding message boards with all manner of variations of my doctors stupid or just doesn't understand. As Dr Peggy said this is a great time to not be in practice.
She went on to do one of the finest presentations of how to be an advocate for your disease I have ever heard. Beyond that encouraging these kids To learn how to say "This is bothering me so I can't do XXX, could you help me do YYYY so XX can get done. they actually role played. preparing for drs appointments. dealing with the schoo, friends etc etc. They do similar classes for adults on the local basis as well.
I went through several months of hell here a while back changing the culture from a pity pot chat room to an outstanding source of information and support for moving forward. We put together a team of mods who have built a community I would not hesitate to show with pride to any Colleague of mine and ask them to recommend it.
I have always believed every decision needs to be made no matter how disconcerting, inconvenient, and uncomfortable to those making it to best serve the patients.You can debate it knock it around have multiple discussions but you always know what the decision will be. You know people are going to take it personally, are going be upset, point their anger at you if you made it said or said it. You also learn chances of softening it are making easier are only going to prolong the pain so you just do it or say it. And then ride it to the end
Several of us were asked to help out some others Ben Friends communities where we discovered Decisions are not always being made for the physical well being and saftey of patients first. After a very frustrating few days where a very special friend of mine got beat up pretty bad for presenting evidence of a particular medication being counter productive if not out an out dangerous, I left for Camp. My friends situation still had not been resolved on Saturday.
When Dr. Peggy and several of the Arthritis Association folk surrounded me with smiles on their face, I knew something was coming. I had resolved (before I even got to camp) to say no to what ever they had in mind, my plate is full. I never make make snap decisions. Sat. I did.
I am now an Arthritis Association Ambassador which is only a 10 hour a month commitment. HOWEVER I am working on a special project. (They used those words patient care first priority) That will take much more than 10 hours a month and sadly will involve travel.
There are 7 states that have NO Pediatric Rheumie. Even my Town with a huge PCP residency Program, a satellite medical school, One of the worlds major Cardiac Institutes (if you have a mitral valve problem)The largest Infectious Disease NIF Lab in the country (Lyme is on the top of the list), GlaxoSmithKline Biologicals manufacturing (and research) has no Pediatric Rheumie. Our Montana families travel as many as 12 times a year to Seattle, or SLC for treatment. (a 1000 mile or more round trip for most of these parents - which comes out of their own pockets of course) Worse some of these kids miss 50 sixty days of school. Seattle Children's sends a Rheumie to The regional Pediatric Specialty Clinics every couple months but its generally diagnostic an continuum of care as its a rotation of 4 docs difficult
So as the result of a temper Tantrum (I seriously can not remember being this pissed/frustrated in ten years) I committed to trying to nail down a 5 million dollar grant to be dedicated to pay off student loans for pediatric rheumatologists willing to commit to a period of time (4 years is our initial thoughts) to practice in one of these effected states. The five Million is the easy part, finding the docs and more importantly finding practices willing to bring in a money loser will be the hard part.
As of Saturday evening I withdrew from the other things I was doing at Bens Friends, I know Ben and Scott will continue to work at establishing the priorities that attracted me here in the first place and others will help. As my new "job" heats up I will be spending less time here (I'm sure to the relief of many) To prepare for the fact that LWPsA will soon be unable to be an integral part of day long activities it is no longer one of my tabs. I'll of course will be checking in periodically because of the many many friends I have made here. I appreciate each and every one.
Thank you all so much
I for one, Lamb, will miss you. But I am pleased with your new very worthy role. Happy Trails and don't forget to come see us when you can.
Way to go Lamb! I can think if anyone who could do what needs to be done, but you! Just take care of you blood pressure when butting heads with the dunner heads who sometimes cant or wont see what these kids need…Bloody proud of you Lamb, yes we will miss your wisdom here, but with the other great mods we’ll be fine x
Sounds like a great opportunity and I wish you every success in getting this off the ground. Will miss your encyclopaedic knowledge and straight talking but the kids of these states need you more than me/us right now. Good luck and have fun too.
We'll miss you around here, but you you'll be performing minor miracles by getting that grant and finding a few excellent pediatric rheumatologists to carry the burden. In the meantime...WAY TO GO!
I totally agree with sybil - you are the man for the job! You sound fired up to get this done - and it is SO needed. THANK YOU for doing this - and for all you've done for Living with PsA - and for checking in on us and, I'm sure, keeping us in line. :)