Just sharing

[The Wife]

How about Goofy's Gang?  That way Sluff and all the boys can join in.  I'm now imagining Sluff riding his motorcycle with a boa around his neck.  

You know, I keep thinking that something more has to be done to increase awareness. I'm thinking that maybe we can take this idea about the boa's to the Kidney Foundation, the renal wards, clinics, wherever there is a dialysis machine or related information about this disease.  Okay, I’m just going to let my mind go…get stores involved, sell boa's, raise money to put into the pot that the Kidney Foundation dishes out for whatever is needed or create something ourselves.  Whether we like it or not, this is a part of our lives, so why not do something that can do some good?  

I could be thinking out of my hat but hey, great things have been created by a thought.  Just look at this website.

[petey]

Oh,  Wife, that's a great idea for awareness!!! You are too smart!  When I see a pink ribbon, I think "Breast Cancer Awareness" -- no words are necessary.  Wouldn't it just be the bomb if the sight of a purple boa made people everywhere think "Kidney Disease Awareness"?  The boa is a flashy, makes-you-look kind of thing (kind of like the name "I Hate Dialysis" -- makes you pay attention and want to find out more).  The boa is a different kind of symbol, and it will get attention.

 Let's think this thing through seriously.  We'd have to know how to get started with it and if we wanted to raise funds (if so, where do they go?) or just awareness.  We have to plan like this will take off like a rocket and exceed even our expectations.

I thought I wanted a pink boa -- but, no, it has to be purple.  That was Goofynina's color.  Like you said, "When they ask what it's for, I'm going to tell them about a woman who lost her battle to kidney disease, and how, no matter how she felt, she always brought love, laughter, and inspiration into the lives of others."  Using her as our inspiration for this, we can make Goofynina "live" on earth forever.   "Goofy's Gang" -- that's the perfect name!

Sluff, on his motorcycle, with a purple boa flapping along behind him is a sight I must see!

Okay, where do we start?

[The Wife]

I don't know about smart but I do have a creative mind.  Purple eh?  I was thinking Red because of Valentines Day, in memory of....but if purple was Goofynina's colour, well....

IMAGINE

[The Wife]

One of those weird computer things just happened.  After I wrote IMAGINE, my post posted.  Don't know what I did but there you go....so that's where we start.  Sit and imagine, let ideas come to us, then come here and share.

Goofynina, you will always be an inspiration.  Thank you for touching my heart.

[petey]

Hey, red's fine, too.  I just thought I remembered reading somewhere that Goofy showed up in Vegas wearing a purple boa and a tiara.  Help!  Someone who was in Vegas in October -- what color boa did Goofynina wear?

Wife, my mind's running.  I'm thinking, thinking, thinking.  This could be BIG.

Here's a big ole hug for Goofynina    love ya, girl!

[The Wife]

I also love purple but I'm thinking about red again - in memory of for all who have passed, Valentine's for Goofynina, heart as in love, blood representing hemo, passion for life...

It is big.  Kidney Foundation.  Local TV stations.  Interviews.  Walks or motorcycle runs.  Oprah 

  to you Petey.  Good luck tomorrow.  I have a busy day and am not sure when I'll be back on.

Sweet dreams  

[kellyt]

I wasn't there, but purple was the color of the boa.  There are photos somewhere on the site.   

[kitkatz]

It was a purple boa.  I will buy mine as soon as I find one.  March is kidney disease/organ donation month. I am going to wear my boa all month!  I do not think color should matter, just the fact that the boa is there in memory of her.

[Psim]

Wow. What a great idea. Boas for all!

[rose1999]

Don't know how I've missed this one but I LOVE the idea.  I had a colour consultation once and was told that purple is one of those colours that suit everyone so I VOTE FOR PURPLE BOAS! 

[petey]

In literature, we teach color symbolism.

Purple is symbolic for royalty -- how fitting is that?  Goofynina was the "Queen" (both self-proclaimed and IHD acknowledged)

Red is symbolic for love / lust,  pink for passion / friendship,  white for innocence /purity , black for evil / sometimes also power, yellow for cowardice, green for life / sometimes also jealousy, etc.

[The Wife]

I was thinking about the royalty thing too in regards to the colour purple.  Sounds like purple boa's all around...

Now onto something else:

For the first time in a long time, my hubby slept all night last night!  Which means, I slept too!  The second night of 1.5 did the trick with the cramping issue.  Let's hope this continues. 

[MyssAnne]

FINALLY!!!!

I'm so happy LL  AND you got a good night's sleep!!!  Man, it feels good, doesn't it?

So the answer seems to be not as much taken out? Makes sense!!!  Now, let's shoot for
another night of sleep!!!

 

[paris]

Ok ladies, I have been gone so couldn't jump in sooner.   What you all don't even know is that while Alohabeth has been organinzing the kidney team "walking for Nana and Nina" she had decided the girls would walk wearing tiaras and purple boas!!   I was able to tell Susie's family about the Walk and the tiaras and boas and they loved it. They want pictures, too.  I am so proud of how my family has pulled this together to honor Susie.  AlohaBeth's team in now #1 in money raised in our area (over $4000 since the 15th!) and three of my children are in the top four fundraisers.  While I was gone, the team swelled from 5 to 11 with 4 more joining.  Get your purple boas and wear them on March 29th and walk in spirit with our team to honor Susie. It is just a start, but we can make the purple boa a real movement!!  Also, the area newsletter is going to have a feature article about our team--so more people will read about our Susie.     If you want to have some good laughs, go to the thread about "brits on dialysis" and you will learn more about the tiara. You will see why she showed up in Vegas with her tiara and boa looking like the queen she was.  It is one of the funniest threads on the boards.

[The Wife]

Sleep is definately good.  I slept in a bit this morning and our cat starting pulling my hair with her teeth to get me out of bed!  I got up, looked at her food and water dish, shook my head at her when I realized both of her bowls were full, gave her a couple of pats, turned over and went back to sleep.  And then I heard LL get up.  (He sleeps in the living room with his machine and tv.)  I could instantly tell that he had a good night sleep by the funny things he was saying as I was making the coffee, and of course, that I didn't get woken up by the sounds he makes when he's cramping.

His hands were cramping a bit after breakfast and he went back to bed after a few hours. He was really tired, but all in all he had a good day.  Me, well, I cooked up a storm to put in the freezer.  Two boxes of veggies and high potassium fruits were given to us.  And when I say two boxes, I mean two boxes!  My fridge is so full that I had to put a box outside, plus a large bowl of apples and pears.  I wasn't expecting either one of these boxes but when I pulled everything out, I was doing the yippee, lots of food, and oh my god, what am I going to do with everything, dance.  But it's good.  It'll cover us for the long month ahead.  

These foods are from a program that supports local growers.  You order once a month at community centres, it's cheaper than the grocery store so you get more, and mostly organic.  Unless you get the all organic box.  Our city is working on sustainability and pulling together as a community, and since we live on an island, it could come in handy if there were ever a crisis.   Anyway, the regular box was given to me for some volunteer work I did awhile back, and the all organic box was sent as a gift by an old friend who tracked me down.  Holy smokes!  Talk about a lot of veggies and fruit.  You know the saying, when it rains, it pours?  Well, it poured an abundance of healthy and fresh grown foods.  Good thing I love to cook and create recipes, and good thing everything in the box is good for LL.  The nurse said to keep up his potassium and I think with everything we now have, that shouldn't be a problem.

I am so grateful for all of this and for the fact that I had enough sleep to wash, sort, peel, cook, and create aromas that I'm sure the whole neighbourhood could smell.  

It was a beautiful day.

[The Wife]

Ok ladies, I have been gone so couldn't jump in sooner.   What you all don't even know is that while Alohabeth has been organinzing the kidney team "walking for Nana and Nina" she had decided the girls would walk wearing tiaras and purple boas!!   I was able to tell Susie's family about the Walk and the tiaras and boas and they loved it. They want pictures, too.  I am so proud of how my family has pulled this together to honor Susie.  AlohaBeth's team in now #1 in money raised in our area (over $4000 since the 15th!) and three of my children are in the top four fundraisers.  While I was gone, the team swelled from 5 to 11 with 4 more joining.  Get your purple boas and wear them on March 29th and walk in spirit with our team to honor Susie. It is just a start, but we can make the purple boa a real movement!!  Also, the area newsletter is going to have a feature article about our team--so more people will read about our Susie.     If you want to have some good laughs, go to the thread about "brits on dialysis" and you will learn more about the tiara. You will see why she showed up in Vegas with her tiara and boa looking like the queen she was.  It is one of the funniest threads on the boards.

You were posting at the same time as I was Paris. 

Oh wow, this is great to hear.  I need to find out if there is a walk here.  I'm on Vancouver Island, Canada.  When I looked it up on the net, the only walk I could find isn't until September and it's up island. 

If there isn't a walk, I might just join in by putting a purple boa around my neck and walking around by myself.   

[paris]

I think every area has their walk at a different time.   We can't all walk together, but we can walk in spirit--so I will remind you to put on your boa on March 29th and you walk right where you are.  You'll be part of the invisible team walking beside us (well, maybe not me! 5k might be more than I can handle, but I'll be there!)    Isn't wonderful how we all came up with similar idea?   

[petey]

Isn't wonderful how we all came up with similar idea?

Paris, we were all inspired by the same beautiful lady -- a laughing lady in a purple boa!  It must be that Susie sent several of us the same idea because she was afraid one of us wouldn't get it (probably me -- but, hey, Goofy, I got it!)

I love it!  I love it!  I love it!

[kidney4traci]

hey there ladies, what a great thread!  I just had my morning coffee and read through it all.  Can I jump in?  I love your writings TW! And I too will be wearing a purple boa!!  LOVE IT!  You all are so creative....  TW - I don't know much about PD, but when I feel tired and cramp up is when I get too dry.  Sounds like you are lightening up on how much fluid you remove by taking about the 1.5 two nights in a row?  By keeping some fluid on it does help - our bodies need water and the oxygen in the water for our cells to be healthy and able to refresh themselves.  I understand the process of dialysis, but really think we as pts do better when we don't get so dry.  I remember in clinic they stress it so much to get to your dry weight.  At home I can control it so much better and feel better now too.  Too much fluid is bad, and it is a tough balance. Kudos to you for taking such a big role in helping your husband. 

[MyssAnne]

Wonderful ideas!!!!  I love the idea of purple boas, we ought to let everyone else know where we get them if we find any, so
others can get them as well!!

TW, I am thinking of you, how did last night go with the exchanges for LL? Cramp free? Oh I hope so.

And congratulations on your 2 boxes of healthy foods!!! What a wonderful treat to have!!!!

[paris]

MW, glad you and LL have had a better night and so glad about the fresh groceries sound great.

re: purple boas    Oriental Trading.com has them.  Fabric and craft stores usually carry them (JoAnn's, ACMoore, Michaels) and party supply stores.  Can you tell AlohaBeth has been researching??

[The Wife]

I was about to post earlier this morning when I heard him.  Cramping.  Again.  Another bad one.  Just a few minutes before, he was sleeping, soundly.  A few hours earlier, at four A.M, I was awoken by the light turned on in the living room.  Why was he up?  Could he not sleep?  Was it another cramp?

"My legs are aching," he said.  "The start of another cramp.  It woke me up." 

All I could do was sit beside him for awhile before heading back into bed.  I don't know what to do to help him.  He's now using the lightest bag of fluid and there's plenty of potassium rich foods for him to eat.  Maybe it is his dry weight.  He has been eating better this past week and even though his dry weight is slightly above what's written on the top of his record sheet, he might have gained a bit more.  Two weeks previously, his appetite was poor, so this would make sense.  A balancing act is an understatement.  I'm beginning to wish I knew how to juggle.  Maybe the act itself would bring me the answer I need.

So how does one decrease the amount of fluid removed when there might be weight gain, and you're using the lowest percentage available?

[MyssAnne]

Oh no.  This is a very delicate balancing act. In order to pull fluids off you need to use either a stronger dose OR more 1.5s.

I wish I knew what to tell you.  You're doing what you can, both of you, but unfortunately you don't always know if it will work
until it doesn't. 

All I can do is offer hugs and my best wishes.

 

[The Wife]

His ankles are skinny, so this is a problem of having too much fluid pulled out.  The higher dosages left him dealing with more cramping.  1.5's had decreased the amount of time during the day and night where he cramps, and he's using all 1.5 bags.  At least he has his meeting with the Kidney Care Team at the hospital on Tuesday.  Maybe there's another solution they haven't thought of. 

At least he's not cramping at this moment.  And in this moment, the sun is shining outside my window.  A fresh breeze blows the curtains toward me.

Ahh...

I sit and take in a breath of fresh air.  Sometimes, it's the only thing I can do.

[kidney4traci]

I wish I knew - with Nxstage I can program it to pretty much take off any fluid amount I need.  I don't know with PD.  Do you have to use the 1.5?  Maybe have him drink more during the day to increase his fluid for the next day or so and still take off as little as possible.  As long as he isn't having problems breathing or feeling nauseous.  ??