Just sharing

[The Wife]

Thanks Paris.  The new medication is causing constipation and as we know, this is not good for someone on PD.  He's so filled up with toxins, it's worrysome. Always something, eh?  Fortunately, Wayne's nurse called again before we had a chance to pick up the phone and call her.  I like her.  She seems to actually care.  She's going to get his doctor to order something for this new problem.  The lungs are continuing to improve and he's still on antibiotics. 

Sometimes I wonder how we have the strength to keep walking through these challanges.  I suppose everyone has different methods of coping.  As you know, I breathe. 

When you breathe, do you stop at your chest or do take it down into your belly? 

As I write these words, a breeze blows through the opened window.  It blows my hair back and refreshes my skin.

I think I'll just sit here for awhile and enjoy it.    Take a deep breath, fill your tummy expand, release, and smile.

[LightLizard]

this is my new 'toy.' to me, it's not really a toy. it's a tool of sanity and beauty...

http://www.youtube.com/watch?v=6JvOnnqGqgg

(if you want to see joie, look for the video 'abiding high' - she is..heehee)

[breezysummerday]

Ha!...LOL

it's good to see Joie smiling   
   

(if you want to see joie, look for the video 'abiding high' - she is..heehee)

[The Wife]

I couldn't help myself.  Wayne was quite ill during that recording and I thought I'd join in with my magical stick.  You know, see if it can shake the virus away...   If I'd known he was going to post it on the internet, I would have combed my hair and worn a bra.  Geez...

Anyway, it's now over a week with the constipation issue and I'm concerned.  Even though he's taking the liquid that was ordered, it doesn't seem to be doing much.  Today is the last day of antibiotics.  Hopefully things will start moving in a more productive way. 

Toxins.  Toxins that aren't being removed from dialysis and toxins from being constipated too long. He became confused one night but that has passed.  I know constipation is not good for someone on PD.  I've read it affects how much of your dialysis fluid is getting through.

It's been one thing after the other and I would like a break from having to worry.

I'm sure he would like a break too.

Today is the last day of the pain clinic.  Yesterday, we talked about depression.  Good timing.  All in all, I've learned a lot and am looking forward to going over my papers and putting together what I need to take care of myself.

AND I made a friend or two.  You won't believe this.  One woman I connected with used to be an RN in the hospital.  Worked in cardiology.  Knows a lot about open heart surgery.   This is a double gift! 

And she wears the same size top as I do.  When I told her I loved her style of clothing, she said she thought we were the same size and is planning on passing me clothes when she's tired of them. 

Things just keep getting better.  Now to get Wayne to poop.

Oh the things I share...

 


 

 

[silverhead]

It seems just about all Kidney patients face constipation problems, what with fluid loss or build up constantly, one of the tried and true things we know will work when medication does not do the trick, believe it or not is Sauerkraut , especially the "bagged" type in the refrigerated section of the store, cooked with some spare ribs on the stove top, consume the meal and keep a clear path to the bathroom, it works really fast.......

[The Wife]

Thanks Silverhead.  We have a jar in the fridge. Yeah, constipation is a problem this is too much.  All of this is causing him to cramp again too and he's drinking a lot of water. 

As soon as the home dialysis unit opened, I called and talked to the nurse.  I am so grateful to have someone to call.  Anyway, she talked to the both of us, is listening to all of my concerns,  and tomorrow I'm going to see if I can get my neighbours car so that I can take Wayne to get blood tests.

What a month.

[LightLizard]

'keep a clear path to the bathroom' that broke me up!
thanks silverheaad, i'll give that a shot today!
 

[LightLizard]

a little bit 'o' nostalgia fer yez...

http://www.youtube.com/watch?v=je78s17kW8s

things are flowing nicely, these days. (thanks silverhead!)

 

[LightLizard]

a piece of the evening...

http://www.youtube.com/watch?v=9cLyRCCAClU

 

[LightLizard]

for those of you that think my posting my music is just an attempt at shameless self-promotion; FYI, i have nothing else to offer the world but my music. and really, i don't and won't be making one penny off of any of it.
i'm a dialysis patient, too, y'know.
 

[silverhead]

Keep posting them, I enjoy it........my only musical ability's lie in my ears

[LightLizard]

  thanks for 'getting' me silverhead. not many do, it seems. i take solace in the saying
by my favourite american author, henry david thoreau;
'nothing is as good as it's popularity.'
 

 

[rose1999]

I think it's great that you share your music with us, I wouldn't be brave enough to do something like that (when it comes to musical ability I'm with Silverhead!).  As for making money, I wish you could make money out of your music, it's a lot better (and more calming/soothing) than a lot of stuff 'out there' - keep on posting.

[Hanify]

I think it's great, and wouldn't care in the slightest if you were to make money from it.  Keep posting them.

[silverhead]

Besides, we can all say "I knew him when"............

[LightLizard]

thanks friends. now i feel like i might have sounded like i was fishing for compliments. sheesh, i'm so stinkin neurotic! musicians are a weird bunch, hey?
seriously, thanks for the kind words. and when it comes to making money from my music; been there, done that. about 40 years ago. had my turn at the 'big time' and got close enough to realise that the lifestyle wouldn't serve me well at all. so now, i play for therapy, more than anything else. sharing it with ya'll is my feeble attempt at 'giving back' to the world. even with all the complications of life, dialysis and the periphrial shenanigans, i still have enourmous gratitude for this process we call 'being alive'-
i may not say it often, so that's why i have to play it.

love to all

LL

[willowtreewren]

I just wanted to add my 

I also enjoy your videos. Sharing your music is more of a gift than you might know.

Thanks.

 

[LightLizard]

thank you so much willow. the hope of that helps to keep me going.
music, in general, i find igives me incentive to continiue on, regardless of the pain days. if i play thru the pain, it seems to be so much more bearable.
like good friends.
 

[YLGuy]

First: thank you for sharing your music with us.  I enjoyed watching but mostly listening.  I have a quick question.  Do you have a fistula?  In a previous life I was a percussionist.  Now, when I clap my hands my fistula feels...weird.  I would imagine slapping a drum would drive me nuts. Thanks again!                           

[LightLizard]

thanks YLguy. i do have a fistula, in my right wrist. it's never been used because i do home P/D for now. the fistula is for 'back-up' should i have to go to hemo. it hasn't caused me any discomfort at all while drumming, or playing guitar...if it were to be used regularly, i wouldn't be surprised if that changed.
 

[LightLizard]

 

http://www.youtube.com/watch?v=8yuknJPJJ0U

 

[LightLizard]

words can be so inadequate sometimes...

http://www.youtube.com/watch?v=02E3t_O0TVQ

 

[redz812]

LightLizard, what is that thing??

My husband is on home hemo dialysis. He is a bass player since the age of 14 or so. He is now 59. Somehow he managed to keep playing up until 1 wk ago. He was so weak and flubbed some notes on a gig. The band has been very kind to him over the years with his various medical conditions but they were worried about him and kinda nicely told him to take a break and get himself feeling better. He is very, very depressed. He lives for music and now feels that he will never be back on the stage again.

I found your YouTube and some posts and felt a kinship....

[LightLizard]

hi red. i really feel for your husband. that must hurt a lot.
let him know i'm open to emailing, if he's into it.

the instrument you ask about is called a 'hapi' drum. 'hapi' stands for; 'hand activated percussion instrument.' it gives drumming a more musical approach. essentially, it is a metal tongue drum. the 'tongues' are different sizes designed and tuned to present a specific note. they are very easy to play, especially for anyone that has some experience with any kind of instrument.
they are made in california, and while they might  be a  little 'pricey'- they are very well made and could be passed down from generation to generation. you can check them out here

http://www.hapitones.com/virtual-hapi-drum-e-major.html

i feel bad for your husband because i know what it's like to have your music taken away. and everything else, too. i played the kit, professionally, for many years, but thanks to renal problems, my legs won't work the bass drum and hi hat anymore. lucky for me, i started with hand drums when i was around 12, 13, so it's easy enough to return to that for me. i hope your husband can adjust and find a way to stay musically active, even if it's without other players. we all need some kind of life raft, and for the musician, that's what music is.
i'm on facebook too, under the name wayne wilson -vancouver network.

all the best.

w

[redz812]

Thank you LightLizard, I think right now he is in shock and scared. I am trying to be encouraging by telling him that he has been in crisis before and that the wonderful drs and staff at the Hosp of the Univ of Pennsylvania here in Philadelphia have dealt with his medical issues with good results. At the same time I pray.

He isn't much for message boards or talking about his illness very much. I remember when his kidneys failed years ago and his dr at that time said that he would be listed for a kidney/pancreas and that that was exciting. We both looked at each other like the dr was out of his head. Exciting! Real exciting. But ironically, 6 mos later when he got the 2 organ transplant and they worked it was exciting. The pancreas is still working but after 16yrs the kidney gave out about 2yrs ago.

It is such a special gift to be artistic and I have always admired people who have found their passion and work hard to realize it. To the outside world playing in a band ooks like fun but you and I know that it takes a lot of dedication and hard work to be a working musician.

So I like what you do with that hapi drum. It is a very cool sound. I will be checking you out on Facebook and hopefully hearing more music from you...