Recycle Old Electronics and Make Money for Vasculitis

Here is a no brainer. One, we all have those old electronic devices we never quite know what to do with when we no long need them. Two, we should always be on the lookout for ways to make money for vasculitis research. Here is an easy way to do both...

Collect Old Wireless Cell Phones, PDA's, iPods or Digital Cameras, then send them to Recycling for Charities using the Vasculitis Foundation link shown below.

Depending on the model and condition of each item they will donate a % of market value for every item to be refurbished, and a flat donation amount for every item that is recycled.

Those who wish to make a charity phone donation can initiate the process by simply collecting any sort of unused cellular phone, PDA, Palm Pilots, digital cameras or iPods. If you know many people who would like to donate their electronic devices, take recycling a step further by organizing fundraising recycling drive or corporate event. The more people that donate old cell phones, the more the environment and local charities can benefit.

Start here:

Recycling for Charities - Vasculitis Foundation
http://www.recyclingforcharities.com/charities/vasculitis-foundation-115.html

New section on NMVascultis Education page for Syndicated Medical News

I am crawling out from under the rock I found myself under and added some new resources to the Education page of the NMVasculitis website. There are some great resources there for general medical news, and the MDLinx service will deliver specific topics right to your inbox:

Syndicated Medical News
https://sites.google.com/site/nmvasculitis/Home/support/education#TOC-Syndicated-Medical-News

June Meeting tonight - agenda is ideas for the VF website

The meeting tonight is again at 6PM at Deli-Berry (2520 Juan Tabo Blvd NE). You can find more details and map links on the nmvasculitis website:

http://www.nmvasculitis.org/Home/support/meetings

I hope to see some of you tonight, at Deli-Berry. I will be there at 6PM, and I will stay at least an hour. If someone joins me, we can stay as long as you like. If you cannot make a meeting, call me. I will be happy to meet for a drink sometime.

My agenda tonight is to solicit ideas about improving the Vasculitis Foundation website. I am on the committee to select the company which will redesign the website going forward, and I am very interested to hear your ideas about how things can be improved. If you cannot make it to the meeting, then please send me your thoughts in Email, or call me.

I want to take this opportunity to apologize to all of you for not posting to this blog during the past few months. I have answered phone calls and have been active in other ways, but not in ways that are apparent to most of you. Most of you never actually come to meetings, so it is an act of pure faith to keep holding them. I believe it is worthwhile for those times when someone does come. Sometimes it is a new patient with that deer in the headlights look, desperate for information on how to get started. Sometimes it is a chance to see one of my vasculitis friends, some of whom are becoming old friends. If and when you feel the need to participate in the vasculitis community, you can know that I and perhaps a few others will be there.

The flat fact is, I would love to see you. I feel that way every month at times like today, when I sit here wondering if anyone will show up and who they will be. I would love to see more patients, caregivers and friends of vasculitis come out to the meetings. Not only to share the practical knowledge about vasculitis, but also to break bread and share the day to day stories about your lives. 

I would really like to get to know you better. If you have any interest in cultivating friendships with people that can actually understand what you are going through, I beg you to come out to the meetings, and get to know each other better. I beg you to respond to the Email group, and share those little things -- large and small -- that make us all who we are.

Do you sometimes consider the connection between how increased awareness about vasculitis directly impacts the available public funding for research? Then do you think about the obvious conclusion that more research would mean a greater chance that more and better treatments will be developed? Have you also considered that how you include vasculitis awareness in your day to day life is a huge part of that effort?

It is not the big things that make the most difference. Sure, we can organize some event to spread awareness. But I have learned that is very hard to do without any help. It requires a concentration of energy and money on a particular place and time for a limited effect.

The more effective approach is to wear it on your sleeve and tell everyone you meet your story. Do not hide from it, share it. When you have told your story a few times, it gets easier, and it really does make a difference. When you tell it enough, you can do it without relying on just the sad parts, or the hard parts, you can eventually related how even the challenges can bring light into your life. People will respond to those stories as they relate to you on a personal level.

Those people you touch carry your story with them, and they will tell it to others. They will remember your story when they vote on legislation that impacts health care, and they will remember your story when they have the chance to make other choices that impact chronic illness. Even if they never come directly in contact with a vasculitis patient ever again, your story will impact how they relate to other things in their lives which will ultimately spread those little ripples that will positively impact you. Put it out there in the universe, and it will come back to you in ways you cannot imagine possible.

As always, the Vasculitis Foundation is here to help you connect to each other, and to connect with more information. But you are a part of that process, and I need your help. Just talking with you helps me to help others. I will spend time this summer reconnecting with those of you who I have met, and connecting with some of our newer patients whom I have not yet met face to face. 

Cheers!

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."