March Madness in New Mexico

I began this message sitting at the March 2011 meeting of the Vasculitis Foundation in New Mexico. It sat in drafts for the two months since, and I went back to it today (6/16/2011) and added some observations. If it seems a little random, well, maybe it was.

Pondering recent events, I am reminded of the difference between a 10/90 and a 90/10.

Are you a 10/90? Someone who makes a general plan for about 10% of the project, then spends the rest of the time figuring out the rest and smoothing out the kinks

Or are you a 90/10? Someone who throroughly researches and plans out every move before they initiate the action phase of any plan.

I find it amusing that most people would not disagree that it is better to do a few things very well, than to do many things poorly. In fact, we call that specialization and the world seems to be moving increasingly in that direction.

So what is possible with Vasculitis?

Who are the faces of vasculitis?
We have children, housewives, and military veterans. We have brothers, sons, and fathers. sisters, daughters and mothers. All walks of life are represented. Even though they include a subset of very rare illnesses, the vasculitides are representative of people from many walks of life. The symptoms hit people without regard to socioeconomic status or how well or poorly you have lived your life. You do not get rewarded with a cure for being good, nor do you get punished with "extra" vasculitis if you have been bad. Santa Clause will not hold vasculitis against you if you just don't feel up to participating on those down days.

For non-patients, we struggle because we care about our loved ones. We want to see them happy. We want to see them active. We want to see them well. It is challenging to stand by on a down day and remain quietly supportive when there is really not much we can do. That feeling of powerlessness rumbles inside and makes us yearn for something to change.

Patients need caregivers to be considerate of their limits. Those limits that can change day by day depending on how their various symptoms affect them. Everything from side effects to medications to the ever present chronic fatigue means that patients must make smart decisions about how they will spend the energy they have on a given day.

Looking at the other side of the coin, patients also need the encouragement of caregivers. With the daily burden of feeling unwell, the constant pressure to rest, and the wearisome mental reality of side effects (the meds keep you alive, and the meds also make you feel unwell.) Patients without caregivers have one less ally in their corner. One less cheerleader urging them to continue, day by day, putting one foot in front of the other.

In the balance, patients and caregivers are allies, but they do not always share the same goals. Some days, patients just want to let it all go, and stay in bed, whether that is the right thing to do or not. Caregivers often probe those limits, and it must drive the patients crazy to hear that constant question: How do you feel?

The inevitable answer is always, "Not as good as I would like to."

February 2011 Vasculitis meeting moved to Friday 2/18

This is a one day shift to accommodate my very busy Thursday. I work all day, then coach games for one team, then coach a practice for another team.

The February meeting of the Vasculitis Foundation in New Mexico will meet on Friday, February 18th at 6:00PM. The location is at our current home away from home at Deli-Berry.

Deli-Berry
2520 Juan Tabo Blvd. NE
Albuquerque, NM
(505) 508-0487

Please update your calendars. If you plan to attend, please let me know. If you plan not to attend, look on this as your opportunity to reply and let me know how you are doing. I have not heard from some of you in a while.

If the Friday meeting day works better for you, let me know and I can consider moving all the meetings to Fridays.

Looking for value added?  I will bring DVDs of the 2011 VF Symposium presentations, and we can play selections from that. You have the option to buy them, and I will keep bringing them to meetings if showing them off manages to draw more people to the meetings. You have to show up to see them, or order your own set.

Following up on the last meeting, we have a potential Golf Tournament for Vasculitis in the works, so we might get some new news about that. We should also bring our thinking caps to come up with more awareness ideas. Mine is to commission a poster/TShirt for the NM Chapter that we can wear and/or sell at events.

I will have brochures, lapel pins, and T-Shirts for anyone who attends. Be there or be square.

Take the brochures back to your "other life" and spread the word. At your doctors, at your homes, and even at the grocery store! Tell everyone you know about vasculitis.

See you all on Friday!

Baseball Coach donates kidney to player with ANCA Vasculitis

Wake Forest Coach Donates Kidney To Player

by JEFF TIBERII

February 9, 2011 from WFDD

In college athletics, coaches demand a lot of their players. So, for Wake Forest's baseball coach, it was an easy decision for him to give something back to one of his players in need: The coach donated one of his kidneys.

"TIBERII: Kevin was a highly regarded baseball prospect coming out of Georgia, projected as a future major leaguer who could've made almost a million dollars from his first contract, had he skipped college and turned pro. But he didn't - committing to Wake Forest. However, Jordan got sick during his senior year of high school and doctors diagnosed him with ANCA vasculitis, a rare disorder where a person's white blood cells attack healthy tissues."

[There may be more to this story, like a more specific diagnosis, but it is a story worth sharing... -- Joseph]

The source is copyrighted. To read more go to:

http://www.npr.org/2011/02/09/133629790/Wake-Forest-Coach-Donates-Kidney-To-Player

January Meeting RSVP

There is a chapter meeting scheduled for tomorrow night, Thursday January 20.

As usual the meeting will be held at Deli-Berry, Located at 2520 Juan Tabo Boulevard NE. See www.deli-berry.com for details.

Ok here is the deal...

My daughter and myself have obligations that conflict.

I can get there by 7pm, but not by 6pm.

I need a volunteer to run the meeting tomorrow. Reply when you get this call me at 505-750-3580.

If I don't have a volunteer to run the meeting tomorrow, then I will treat anyone who goes to a frozen yogurt treat - on me.

I will make arrangements with Deli-Berry IF you rsvp with me before tomorrow to get on the list. Without an RSVP, I'm afraid you're on your own.

Sorry for the late notice. I have been trying to make other arrangements. I should of reached out to you guys sooner.

I will stop by the deli tomorrow. Probably I'll be there between 630 and 7pm. So if you go, you can look for me then.

Thanks everyone. Hope you're having a great and healthy January!

Be well,

: Joseph

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January Drifts Along, next meeting in 11 days

Well hello everyone,

You may or may not know that I also coach young athletes on two different basketball teams. The months between October and March, and especially January through March, tend to be very busy as I juggle my work schedule, my coaching schedule and try to keep my head above water on other projects.

The work I do for the members of the Vasculitis Foundation never stops, but during these months I am a bit less active than at other times. I beg your forgiveness for any perceived lapses, and I assure you I am available if you should need help with anything. Mostly that means if you want to talk, just reach out to me and I will make time for you personally.

I learned yesterday about another young patient. There is a boy, 13 years old in El Paso, TX, who has been diagnosed with Wegeners Granulomatotis. Even though El Paso is almost 5 hours away by car, I have invited them to participate in our chapter, which is the closest.  In addition to Haley, 11, and Meaghan, 18, we have a few young adults in this chapter alone.

PS - Bonnie in Taos, no longer has the distinction of being the longest distance member of our chapter. Sorry Bonnie, but we still love you and I would love to hear how you are doing.

NEXT MEETING

I would also like to introduce a simple idea at the next meeting. What if we do one awareness event, even a simple thing, every month this year? We can think about a larger event for Awareness Week, but if we do one simple thing every month, then we will be spreading awareness. Start thinking of ideas folks, because to do this right I will need your help and the help of your family members. Nothing complicated, but I think we need to adopt a Just Do It attitude about awareness.

Our next meeting is on January 20th at 7PM. We will continue to meet at the Deli-Berry restaurant on Juan Tabo Blvd NE since that has been a comfortable place to meet and I personally love the food there. The sandwiches are great, or people can stick to coffee and tea, which are also excellent.  Details about location, etc, are on the website http://www.nmvasculitis.org.

At the next meeting, in eleven days, whoever attends will plan something to do before the next meeting. Why not come join me and put your cards on the table too? Together we can think of something to do to promote awareness about vasculitis. I may introduce some suggestions in a later post, but for now, put your thinking caps on.

For example, here is one of mine... I would like to coordinate an art campaign. This chapter needs a logo, and I would like to inspire some artists to help create awareness posters with a Southwestern theme that I can then post at various businesses to help put the awareness message in front of the public eye. If you are an artist, and this appeals to you, please consider putting forward your best foot and showing us what you've got.

Everyone else, even if you do not plan to attend the meeting, send me your ideas please. 

See you later alligators!

: Joseph Carpenter

Email from this blog is now "fixed"

For the record, and so you see how it will look, I am also posting this message to the blog.

---------- Forwarded message ----------
From: Joseph Carpenter
Date: Thu, Dec 16, 2010 at 10:46 PM
Subject: Email from the NMVasculitis blog is now "fixed"
To: NMVasculitis

Ladies and gentlemen,

Security Change To Blogger Leaves BlogSend Email Distribution Broken

As you all know, the blogs posts were sent automatically to our Google Groups mailing list, and then you got a copy as if I had sent it to you personally. That feature was broken in mid-November. I did not notice until December, so if you missed a few announcements, please visit the blog to read them at your convenience.

The big deal is this. Instead of appearing to come from the posting author, usually all posts coming from Blogger will appear to come from Blogger <no-reply@blogger.com>, regardless of who wrote them.  

I have set up the workaround, so instead of appearing to come from "Joseph Carpenter", group messages that originate from the blog will appear to come from "Blogger". 

It also means that when you reply to one of those posts, instead of coming to me, you will have to send it to the group, or manually add my address back in the recipient field. It is a pain in the butt.

All the people who get the Google Group mail from NMVasculitis, must add "no-reply@blogger.com" to their whitelist of acceptable senders if they have a spam blocking tool.

I have sent messages declaring my disapproval, but you know how it is with 800 pound gorillas. They pretty much do what they like.

I will give it a month or so, then if they do not fix this in a satisfactory way, I may choose to move my blog and/or website to another platform to regain the easy management with Email notifications. 

WHAT HAPPENED FOR ANYONE WHO CARES TO KNOW

Google Blogger made a change to the way they send out Email. They no longer spoof the author address, which was a good thing, but instead use no-reply@blogger.com as the reply to address. That works on paper as a temporary fix to some unidentified issue they were having, but breaks several real world functions in the way Blogger interacts with Google Groups. 

If you manage a blog in Blogger that is also set to send mail to a Google Group, here is what you need to know... To workaround this error, the google group owner must add no-reply@blogger.com as a member of the mailing list. Then you have to set that new "member" to receive no Email, and set them so that all posts are moderated. Otherwise, anyone who spoofs the no-reply@blogger.com address, and it will happen, will also be able to spam your group.

Thank you,

-- 
--
Joseph Carpenter
Albuquerque Chapter Leader
Vasculitis Foundation in New Mexico
Parent, daughter with CSS (DX March '08)

Contact: http://www.nmvasculitis.org/Home/about-cnmvf/contact

Vasculitis Foundation in New Mexico - Albuquerque 

http://www.nmvasculitis.org - http://www.vasculitisfoundation.org

Test Post 5 - Does this fix BlogSend?

Ladies and gentlemen,

I noticed earlier tonight that the feature that copies blog entries to the mailing list was not working.

I believe that stopped working in November when Google Groups made a change to the way they send out Email. they no longer spoof the author address, but instead use no-reply@blogger.com as the reply to address.

This is the latest in a series of tests, and the first one I suspect will actually send to the list again.

If you get more than one of these Test Post messages, please bear with me while I work out the kinks.

Thank you,

Joseph Carpenter