Just sharing

[petey]

Paris -- I found some purple boas online at haloheaven.com . (these were the cheapest I could find)  They come by the dozen ($11 for a dozen of the 42-inch purple ones, and $24 for a dozen of the 6-foot purple ones).  I think I might order a dozen of the 42-inch ones just to see what they look like.  Online, they look pretty good.  When I get them, I'll let you know.

P.S. It was strictly selfish reasons why I thought about the 42-inch ones...I'm kind of short (5'5"), and I didn't want to step on the ends of the boa and trip.  That would be a sight!

[The Wife]

$11 for a dozen?  Wow, that's cheap.  I saw the red ones at Michael's and I think I'll check there for mine.  They must have purple ones. 

This is so great, everyone getting boa's...and Petey, it does seem like we were all given the idea to wear these.  Purple boa's will definately draw attention, which in turn, will help in bringing awareness to kidney disease. 

[ODAT]

...

Ahh...

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

I don't know why, but this image gave me empathy chills and makes me want to cry. Not a sad cry. Just a small cry out to all those who are in this together. The simplest things, so much ignored by most who rush about their life - who don't realize how special just a breath of fresh air is. I just remember wishing my dad could get one really nice whiff of the wind in his last days. I was able to take him out a few times thankfully.

Thanks for bringing me to this place again, one that I suppress so I can get through the day. It is good to feel this emotion though.

So you see, you really should finish that book because your words MOVE people inside. I hope LL finds relief from cramping. 

[okarol]

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??

I brought the one to Susie that she wore in Las Vegas - it was in the Halloween stuff - I either got it at Big Lots or at Walmart, not sure, but it was very inexpensive, as could be seen by the trail of feathers she left in Vegas!
Susie's mom said she searched everywhere for a tiara to take to Vegas, I think they finally got hers at The Party Store.

[The Wife]

...

Ahh...

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

I don't know why, but this image gave me empathy chills and makes me want to cry. Not a sad cry. Just a small cry out to all those who are in this together. The simplest things, so much ignored by most who rush about their life - who don't realize how special just a breath of fresh air is. I just remember wishing my dad could get one really nice whiff of the wind in his last days. I was able to take him out a few times thankfully.

Thanks for bringing me to this place again, one that I suppress so I can get through the day. It is good to feel this emotion though.

So you see, you really should finish that book because your words MOVE people inside. I hope LL finds relief from cramping. 

  to you Odat.  I was thinking about you and your mom this morning.  How is she? Sorry to make you cry but glad to know you're releasing that which you suppress.   I think of everyone who is also going through this and how everone supports each other.  The suffering is hard for those who are ill, and hard on their caregivers, but together, something beautiful takes place.  This is such a great community.  Even though I don't post much around the board, I think of all of you.

Odat, thanks for the encouragement in regards to my book.  I'm working on it and will let you know when it's finished. 

Sorry about the edits...phone always seems to ring whenever I try to post.

[kitkatz]

I have my purple boa sitting on my dresser in the bedroom. I am wearing it to speak about organ donation on Tuesday at Toastmasters.  Wish me luck.

[paris]

A woman can do anything when she is wearing a purple boa!  Rock the house, Kit!

[Wattle]

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

Just a thought. Is LL drinking enough during the day? When I have a problem with cramping it is usually because I haven't had enough to drink during the day. I also use all 1.5 bags. The amount of fluid removal depends on his transfer rate and dwell times.

[kidney4traci]

I love it Kitkatz!  You wil be great!  Post a picture of it!

[kidney4traci]

TW - How did it go last night?  Did you try more fluids during the day?  Just thinking of you.

[The Wife]

I'm pretty sure he's getting enough fluid Wattle, but still, the cramps continue.  Something's not right here.  Last night he had pressure in his stomach, went to bed again during the day, was REALLY tired and went to bed at 8pm...then awoke from another cramp.  I don't know what's going on but I'm worried.  Did he catch a flu a couple of weeks back that's still affecting him, is there a hernia, leakage, or did the quinine do something to him?  His dry weight is now higher than what it says on the sheet, his blood pressure went quite low, then high again. I'm really glad he has to go into clinic on Tuesday where he will see his neph.  I wish I could go with him but Baxter is delivering and someone has to be here.  I've got that feeling that tells me something is off. 

If I had a purple boa, I'd wrap it around my neck right this very minute.  Somehow, just thinking about wearing one gives me strength.  It makes me stand up tall and march through the fire of this dreadful disease.  Kitkatz, you're going to do great.  Here's to you're wonderful speech.

[The Wife]

He just got up and said he didn't have any more cramps after he went back to bed last night.  We'll see how the rest of the day goes.  Maybe I'm worrying too much but in the past, when I've seen him in his low points, he ended up in the hospital. 

Taking a deep breath, releasing the fear that grasps, and giving thanks for another day.

[kidney4traci]

Just a thought - check out this link...
http://www.ncbi.nlm.nih.gov/pubmed/1457907

Quinine is toxic ,and you may consider asking about vitamin E.

Also, when my bp starts to spike at the end of treatment that is when I get too dry.  If I control the fluid better, I feel better. 
 

[The Wife]

We got rid of the quinine after we thought he had a reaction to it.  After talking with the nurse, she said he must have had the flu because the prescription was prescribed two days after our first call.  Still, when he took the second pill, he took a dive.  The nurse said he should try it again but I don't think he should.  Not when I saw what it did to him.  It could have been part flu/part quinine reaction and I don't want to have him go through this again.  Vitamen E sounds a lot safer so I'll get him to bring this up on Tuesday.  In the meantime, he's still so exhausted, more so than normally.

MyssAnne, in a previous post of yours, you mentioned the complications that a flu can have.  No one has ever told me anything about this and if you or anyone else could share what I need to watch for, I'd appreciate it.

Thanks everyone.  I appreciate this site and all of you!

[MyssAnne]

TW,

There's an epidemic, apparently, of flu. I don't know how widespread it is in Canada, but it's
bad here in Indiana.

The one time I am so grateful we are required to have the flu shot.  Someone else can jump in here
with more expertise, I'd be grateful if they did, but my experience with the side effects of flu were
the vomiting and the diarrhea, which left me weakened and which also skewed the effects of dialysis.

I do think perhaps LL might need more liquid, as suggested, it's so easy to get dehydrated without
realizing it. Does he have a bottle of water with him at all times? I've tried that, and that seems to
work, I'll drink from it if it's right there, and a lot of times, I drink half the bottle in one gulp. Thirstier
than I'd realized! 

[The Wife]

Thanks MyssAnne.  I understand the normal effects of the flu but what do you mean by "skewed the effects of dialysis?" The flu's here in Canada are much worse than they used to be and it seems that all he has do is go outside for half a second and he catches whatever is going around.  No wonder he doesn't want to go out - even if he could walk mroe than a block or two without wanting to lie down on the sidewalk. 

He also always has a glass of water on the go so I know he drinks a lot.  For awhile, I thought maybe he was drinking too much but no, it was the other way around.  Oh yeah, last night he said his entire body hurt and that doesn't include the cramping or the after-effects.  Does anyone else have this problem?

Just when you think you're getting it figured out, someone throws in a wrench and you have to open a whole new section of the book.  I just wish he could have one really good day again...you know, a day where we could walk in the park, go for coffee, be NORMAL.  Ohhh...what we used to take for granted.

[MyssAnne]

I'm sorry, I'm not feeling good today, so I'm not as coherent as usual. Today is not a good day for
me. I'm not as bad as LL, but bad enough I had to stay home this weekend and not see my honey.
Too tired for the drive.

What happens is the drain will not be as effective as it could be. Or, it might take too much off,
which also adds to the misery, since it causes the cramping. I'm starting to think LL really needs more
liquids overall. 

What is his blood pressure like? Normal, for him? Lower than usual? Higher than usual?  If it is lower than usual, have him eat something salty as well as drinking extra fluids. Wierd, I know, but it does get the blood pressure back up. If it's higher, the extra fluid will help, somewhat. If it's normal, for him,  have him drink a little more extra fluids. I guess the bottom line is now, have him drink extra fluids. There's always the watery
foods too, watermelon, jello, popsicles, etc.

I'm sorry, TW. It's just not a good day for me to hand out advcie. It's there, it's just in a fog right now.

[The Wife]

Oh Annie, I'm sorry to hear you're also having a bad day.  Come and lie down.  Let's just be in silence for awhile and feel the fresh air as it blows through the window.  Ah, that's it. 

Take care sweet one.  We'll get back to the conversation when you're feeling more up to it. And by the way, your writing is not as foggy as you think.

 

[petey]

TW,

There's an epidemic, apparently, of flu. I don't know how widespread it is in Canada, but it's
bad here in Indiana.

The one time I am so grateful we are required to have the flu shot.

From what I've heard and read, there's a terrible flu epidemic all over the US (except in Florida).  It's a new strand, and the flu shots from last fall don't touch it.  This past Monday when I took Marvin to get his staples out, our family physician told me to keep Marvin out of every crowd -- no public places (not even church).  She told him, "Mr. Marvin, this flu is wicked, and it will take someone like you out of here."  We have listened to her -- the only places he's been in the last week and a half are her office and the dialysis clinic (where, unfortunately, lots of the patients there have ... you guessed it ... the flu -- those that aren't in the hospital with it anyway).

[paris]

The flu is really bad here in Raleigh. Schools have classrooms have empty. Duke hospital isn't allowing extra visitors.  My daughter, Melissa and her two are sick this week. Upper respiratory with high fevers. My sweet little Zeke, has had a fever of 103.5 and just keeps sleeping.  We all had flu shots, but this is a different strain than what the shot was for. We usually spend time together on the week-ends, but everyone is staying at their homes until they get better.

Marvin, stay away from everyone!!

MissAnne, I hope you are having a better day. I've been thinking about you all day.

TW, how are you and LL doing today?  Keep taking deep breaths of that fresh air and feel the calm.

[kidney4traci]

OK, somebody opened the vaccine issue so I must speak up...  Do you know what's in a vaccine?  Formaldehyde (used in embalming), thimerosal (50% mercury used for perserving), aluminum phosphate (toxic and cargenogenic) antibiotics, phenols (corresive to skin), live and killed viruses, monkey viruses, methanol (toxic), aluminum (nuerotoxic)  and a host of other unknown substances that are unknown trade secrets.  Each one has an adverse effect on children, elderly and immune compromised.  However, they push the flu shot every year, and yet it never has the stand that it going around.  And every year it gets worse and worse, but more and more people get the flu shot.  ??

Even worse, a vaccination stimulates the wrong immune system.  When you get a shot of vaccine, it stimulates a Th2 response, which is your emergency response where your body releases antibodies.  This is why you have to get booster shots every few years.   There is no permanant immunity.  When you get the childhood sickeness, you stimulate the Th1 response, which is a cell response, and it lasts a lifetime. 

[The Wife]

I'm really concerned about LL.  I haven't seen him this exhausted in a long time.   Sure he's tired all of the time, but now like now.  He's spending most of the time in bed and says he doesn't have the energy to sit up for long.  I don't know what it is and I don't know how he's going to go for blood tests on Monday and then to the hospital on Tuesday.  It sucks not having a car to take him somewhere when he doesn't have the energy to catch the bus.  I wish cab fare would fall from the sky or a ride would appear for both days.  It would make it so much easier.

The way he's sleeping reminds me of when he was bedridden when he first became ill.  That was hard on the both of us and I don't know how we pulled through.  Especially him. Actually, I don't know how we pulled through a lot of stuff.  But we did, and we will again.

The sun has set and the birds have all gone to sleep but my window is open and I'm taking deep breaths.  I've said it before, and I'll say it again.  To have this space and all of you to talk to, means so much.  Paris, when you said, "Welcome home" on my intro, I cried.  This journey has felt so isolating at times, I didn't realize how much I needed a space and people who really understand what it's like.

You are all so precious.  

May safety from the flu surround all of you, and may a bird sing its beautiful song when you awake in the morning.

 

[The Wife]

That's scary Traci.  LL didn't have a flu shot this year but last year he had no other choice because he was doing hemo.  My daughter tried to talk me into it but I refused.  Now that you've shared what's in it, there's no way in hell I'll ever get a shot. 

[kidney4traci]

I'm on hemo and I refuse it every year.   They make me sign a waiver.  Ha.  Anyway, I am sorry to hear he is so weak.  It must be hard to watch and not know what to do.  My heart goes out to you tonight.  I pray y'all get some sleep - without cramps!

[petey]

The way he's sleeping reminds me of when he was bedridden when he first became ill.  That was hard on the both of us and I don't know how we pulled through.  Especially him. Actually, I don't know how we pulled through a lot of stuff.  But we did, and we will again.

Wife --  Through all of Marvin's years on dialysis, I have decided that he and I are the strongest people I know.  I would have to expand that to include all ESRD, dialysis, and transplant folks in the "strongest" category.  We have all been dealt some pretty tough hands...but, we are survivors.  And, we will get through this.  Keep your attitude up.  Hope LL gets to feeling better.