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Author Topic: Passive Advocay  (Read 7600 times)
Meinuk
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« on: June 21, 2010, 08:55:59 AM »

Sounds like an oxymoron right? But it isn't.  At least I don't think it is.  There are times in my life when I jump up on the soap box, times when I am hiding under that soapbox, and times when I am in the crowd listening to others on their soap box. This past weekend, I was planning on being in "listening" mode, I wanted to be as far away from CKD as possible, since my summer has already been dominated by it. I was volunteering at a Music/Environmental Festival "Clearwater: the Great Hudson River Revival" http://www.clearwater.org/festival/. It combines two of my biggest loves: Music and Sailing. I went to recharge my batteries and just enjoy.  Of course, any cause attracts diehards.  There were some hard core activists (bordering on mentally ill IMHO) and some average working stiffs who were there because they care, and want to do their part.

I had an eye opening moment when I was strolling with as friend through the "Activists" section of the festival.  An older woman walked up to us, shoved a clipboard at me, and asked me to sign a petition to stop military aid to Israel.  We had just gotten ice cream cones, and with my backpack slung over one shoulder and an ice cream in my hand, I said "Umm, can you see our hands are full right now?" I was nice, we had been having a happy stroll. She looked at me and barked, "Go ahead, enjoy your ice cream, I see you have priorities!" and then she stomped off.  Steve and I gaped at each other for a moment, shrugged our shoulders and walked down to the river. We did enjoy our ice creams. Not only did we NOT sign the petition, we were already negatively prejudiced to this woman's cause. It was then that I realized that Activists can be too "Active", and I started to think about my own presentation to the world.

Which led to my second morning at Clearwater.  I was working the 8 - Noon shift in Communications.  A great job, with great people.  We had bonded rather quickly the day before,I was the newbie in the group, and I was welcomed with open arms.  We talked work, music and politics, I listened a lot, and we had fun.  I never mentioned CKD, transplant or dialysis.  There was no need.  To my co-volunteers, I was Anna who used to work at a Law School.

But on Saturday, I got a sunburn on my nose.  Despite copious sunblock and a skin cancer rated protective hat, my nose was red. One of the other volunteers is a nurse, and she was concerned.  I laughed and said, I have Prednisone skin.  She asked "Why are you on Prednisone?" I said, "I had a kidney transplant 18 months ago." The table went silent. She said "So, you are the ultimate in recycled goods!" We laughed.  From the other side of the table, my new friend Chris (name changed for their protection) with whom I had chatted with at length about Law School, Lawyers and debt, outed theirself as an Administrator for a dialysis unit. The flood gates opened, and we were talking health care reform, dialysis, Medicare etc etc.  At different points in the day, others joined in on the conversation, talking about end of life issues, and their own family struggles with dialysis.  There I was, sitting in a chair, music playing in the background, talking with new friends, and I was wearing the advocate hat without even realizing it.

On Sunday morning, Chris walked to the communications tent to see that there were people gathered around my fistula feeling the bruit. s/he laughed at me, "Jeesh Anna, I thought we were leaving work at home!!" The s/he pulled up a chair, and the conversations started all over again.

S/he also talked to me at length about all that the NKF does for people on dialysis financially.  I asked why this isn't publicized.  S/he thought that it was because the NKF does not want a "run" on their financial programs. I still feel like they are hiding their dialysis advocacy in the shadows. I guess I'll still proceed with caution while I take on the NKF.

I have never had a sitdown with a FA that was unbiased and just two friends talking about their work.  I gained a great new perspective.  We talked about my issues with my unit, and how s/he would have reacted as an administrator.  I respected their thoughts. (and I have no doubt that had s/he been the administrator that I was dealing with, things would have turned out differently) We talked NxStage at length.  We talked about the internet, and I was reminded that the majority of people who are working in dialysis and on dialysis have NO CLUE that IHD is out there.  We are in a fishbowl people.  And it is a tiny one. The majority of the kidney world has no idea that IHD exists.

My CKD takeaways from the whole experience were:

Sometimes people can come on too strong, and the message can be tainted by the presentation.

Advocacy is about representation and education.  We need to learn as well as educate.  I was lucky enough to meet a person behind the corporation, and hear their unedited views and opinions. Come to find out, as people, we are on the same page.  It is the business of dialysis that is in opposition to optimum healthcare.

And finally, sometimes, when you just unplug and take some time to recharge the batteries, advocacy comes naturally.  Maybe that is the way it should be for those of us who aren't professionals.  Live our lives to their fullest, and be a living example of what we believe.  When the opportunity arises, then we can climb onto the soap box.

Well, those are my Monday morning thoughts.


Here is Sunset at the Hudson Stage on my first night at the fest.

To see the serenity that is the Clearwater Festival, here is a pic of the Sloop Clearwater under sail.  (I was on another ship, The Mystic Whaler, when I took the picture)

Finally, Pete Seeger, a lifetime of Advocay and music (he is 91, he started Clearwater over 40 years ago, and it is as strong as ever) .  This man is one of my heroes.

« Last Edit: June 21, 2010, 09:20:20 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
monrein
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« Reply #1 on: June 21, 2010, 09:48:02 AM »

Great post Anna and lovely photos.   :flower;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
MooseMom
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« Reply #2 on: June 21, 2010, 09:58:04 AM »

Advocacy can wear many faces, and a quiet and gentle face can be very valuable in the right circumstances.  I think most people are willing and able to learn if you give them have the chance and respect their intelligence.  This is such an interesting and enlightening story; thanks so much for posting it.  We all of us can be advocates in our own way.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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Sunny

« Reply #3 on: June 21, 2010, 03:13:07 PM »

Your post reminds me of my feelings that activism about kidney disease, and many issues related, is really a part of who we are. We may not be holding signs and picketing in front of buildings, but when issues come up in our daily lives, we all have opportunities to enlighten others.
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« Reply #4 on: June 21, 2010, 03:30:00 PM »

 :2thumbsup; Great post Anna. It's interesting how a red nose can bridge communication!

I had a similar experience as a census worker. I could have told people that their participation was mandatory, that they could be fined for dodging the census taker, and demanded that they answer my questions. But I know I probably would not respond well to that approach, so I tried to be considerate, calm and sincere. Out of hundreds of homes I visited, only 1 guy refused (and I would not go back there, he was kind of scary.) I met some great people and it was fun work.

I have learned a lot being on IHD, especially from people like you. You're a great advocate Anna, I always want to be on your side!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Meinuk
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« Reply #5 on: June 21, 2010, 03:46:10 PM »


activism about kidney disease, and many issues related, is really a part of who we are.


Sunny, you totally hit the nail on the head. I really went to Clearwater for a CKD free weekend.  My fistula surgery is tomorrow morning, and I am so conflicted about it, I was feeling like CKD had taken over my life. But then, all of a sudden, it was me, my bulging arm and my three kidneys at Clearwater - I guess we are a package deal.

What was really cool about CKD being a part of the conversation was that it added another level to our conversations.  All of a sudden we weren't just talking about politics or music, we were talking about end of life, and difficult decisions that can rip people apart - yet all of us knew that in every story there is someone who lives to tell the story.  I guess life really is a participation sport. I left the weekend solid in the knowledge that I had some new friends that I look forward to seeing next year, and one that I hope to be seeing a lot more of..... (but that has NOTHING to do with advocacy of any sort)  ::) (we need an emoticon for fingers crossed!!!)

As I was walking down to the docks after my initial "CKD outing", from the Rainbow Stage, I could hear Keller Williams singing "Kidney in a Cooler" - it was like my life suddenly had a soundtrack as I walked to the dock.  Here is a link to "Kidney in a Cooler" on Your Tube: http://www.youtube.com/watch?v=LSweI9MM9WQ

Karol, you are so great with people, I always want you on my side too!!!   You put yourself out there. It is easy for me to write, but I hate meeting new people.  I couldn't imagine being a census worker.  Every door I knocked on would be torture for me.  I have to make a real effort to do something like I did last weekend, go alone to a place where I didn't know anybody.  I tried to talk myself out of it a few times, but my family were really supportive, and I love music and sailing, so I knew that I would have those a perk (I was really excited about the music).   

What was so eye opening for me was that even when I was trying to run away from it, there it was.  I wasn't consciously trying to change anything - sure, I bitched about Davita, Drug Pricing etc, but hey, that's what you do, you commiserate - it didn't dominate the conversation, and we had plenty of other things to talk about. One man shared the difficulty that he and his family faced when they decided to stop dialysis for his mother (that is what started our end of life discussion). I went to Clearwater as an escape, but instead, I found some new friends and some perspective.  It was a GREAT weekend! (I am also sure that the FA has already checked out IHD for the first time!!) Hah!
« Last Edit: June 21, 2010, 04:07:36 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
Rerun
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« Reply #6 on: June 21, 2010, 04:19:09 PM »

Meinik, I'm glad you had a good weekend.  I always enjoy your posts.  Good luck tomorrow.  Let us know how your fistula surgery goes.

      :cuddle;
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Meinuk
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« Reply #7 on: June 21, 2010, 04:27:59 PM »

Rerun, writing always helps me to get my head around stuff that I have to work out.  I found IHD at the best possible time in my life.  I was able to join a community, yet not have to deal with the neurosis of being in the same room with new people.  I needed that disconnect of being alone when I first started dialysis, but I needed the emotional support that I found from day one here at IHD too. And now, I have so many old friends posting here, some I've actually met, and others I just know by their screen name, it is just great to know that IHD is here, 24/7.

I've been updating my Fistula Removal Post http://ihatedialysis.com/forum/index.php?topic=18735.0, and tomorrow, Dr. B will have to wrestle my Blackberry out of my hand (that's how I take pictures now a days) when I get wheeled into surgery.

 :cuddle;

Anna
« Last Edit: June 21, 2010, 04:31:15 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #8 on: June 21, 2010, 07:37:18 PM »

Great story, Anna, and very true. I have been involved in activism before (not kidney-related) and I find that once I learn about an issue I really believe in, there is this adjustment period where I swing so far to one extreme that I have to talk to people and work out precisely where I stand before I can properly present my message, as it were, to interested strangers. (I will never be the clipboard-toting sort who goes out and preaches to unfortunate passersby.) Activism has to exist in the real world, and to expect people to always be ready to sacrifice for a cause, even if it's 'just' ice cream, is setting oneself up for disappointment and unpopularity, not just on the individual level, but for the cause itself. Yes, had I gone through your experience, I would likely permanently make the connection "stopping aid to Israel equals making surly, hateful activist happy" and I would not want anything to do with it.

Best of luck with your appointment. I hope it all goes smoothly and painlessly.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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« Reply #9 on: June 21, 2010, 07:45:31 PM »

It is amazing how without warning or preplanning what we can get ourselves into. Anna your posts are some of the most pleasant to read and some of the most thought provoking. I am amazed that Pete Seeger is still around. I love some of that folk style music that really hit big in the post VietNam era of history. It is one of the oldest music genres out there but wasn't popular til the 60's.
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Meinuk
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« Reply #10 on: June 21, 2010, 08:15:50 PM »

 :cuddle; Sluff bunny (are you still called that now-a-days??) I am obviously not going to sleep tonight, so here I am on IHD.  You know I've caught a lot of flack about going to Clearwater (Hippie Fest as some people who love me call it). I was born in 1966 and my older half sisters were full blown hippie protesters and they are musical.  Folk music played a major part in my early childhood, but a large majority of my friends are conservative - some even ultra conservative.

Cariad, I think it is because I grew up in such a politically charged environment, I have always shunned advocacy. Even though as a teen, I interned on Capitol Hill, I despised politics and politicians, I think that is why I thrived living in Europe, all of the political discussions were foreign, as it was not my "Home", I never even had a horse in the race. I didn't even want to be an advocate for CKD.  It wasn't until I saw bad things happening to me and others that I decided that enough was enough, and I could take a stand. I don't ever want to be that woman with a clip board, but I also don't want to see people die because they can't afford binders or get good dialysis. I guess that as I can, I'll try to be consistent with my advocacy, but I also need to remember to step back and listen to the music. Sometimes, like this past weekend, they both seem to work together.

There are some major political discussions about Pete Seeger.  But what I see is an upstanding 91 year old man who has dedicated himself to correcting wrongs that he has seen in society.  No one has died because they listened to "This Land is Your Land". Seeger is a clean cut, happily married family man who has changed the world I live in.  He spearheaded cleaning up the Hudson River with Clearwater, and he strives to make the world a happier and safer place.

All political statements aside, his song "All Mixed Up" sums up how I feel about us as a society.  We have to embrace the differences, and live a full and happy life. Here is a link to the video, and below are the lyrics.  http://www.youtube.com/watch?v=ovtCfOXaOps


All Mixed Up
 
You know this language that we speak
Is part German, part Latin, and part Greek
With some Celtic and Arabic all in the heap
Well amended by the men in the street
Choctaw gave us the word "OK"
"Vamose" is a word from Mexico way
And all of this is a hint I suspect
Of what comes next

I think that this whole world
Soon mama my whole wide world
Soon mama my whole world
Soon gonna be gettin' mixed up

I like Polish sausage, I like Spanish rice
Pizza pie is also nice
Corn and beans from the Indians here
Washed down by some German beer
Marco Polo traveled by camel and pony
He brought to Italy the first macaroni
And you and I as well as we're able
Put it all on the table

I think that this whole world
Soon mama my whole wide world
Soon mama my whole world
Soon gonna be gettin' mixed up

There were no red-headed Irishmen
Before the Vikings landed in Ireland
How many Romans had dark curly hair
Before they brought slaves from Africa?
No race of man is completely pure
Nor is anyman's mind, and that's for sure
The winds mix the dust of every land
And so will man

I think that this whole world
Soon mama my whole wide world
Soon mama my whole world
Soon gonna be gettin' mixed up

This doesn't mean we must all be the same
We'll have different faces and different names
Long live many different kinds of races
And difference of opinion that makes horse races
Just remember the rule about rules, brother
What's right with one is wrong with another
And take a tip from La Belle France
"Viva la difference!"

I think that this whole world
Soon mama my whole wide world
Soon mama my whole world
Soon gonna be gettin' mixed up




« Last Edit: June 21, 2010, 08:39:53 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #11 on: June 21, 2010, 10:38:15 PM »

I was going to post this and deleted the post.  Found this thread again, dammit, I'm posting!  I love Pete Seeger's music, we had a tape when I was a kid, "Pete Seeger and Arlo Guthrie together in concert".  So many fabulous old songs and songs which were new at the time.  One of my favorite Pete Seeger songs goes:
      "Well may the world go, when I'm far away..." I want that one sung at my funeral. 

Another was
   you know its darkest before the dawn
   this thought keeps me moving on
   if we could heed these early warnings
   the time is now quite early morning.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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