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Author Topic: My fellow caregivers...  (Read 9510 times)
texasstyle
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« on: August 03, 2011, 01:06:26 PM »

...how are we doing today?  Just as we have to check in on our loved ones with  kidney disease, we should check on each other from time to time also. Today is a "decent" day.  No crisis or ambulance calls so I guess it is actually a "thumbs up" day.  I how easily, and how OFTEN we get stressed out    so when life is giving you Lemons for a day well.... you know lol. If I had to rate my day so far I guess it'd be a 7 on a 1-10. Not bad!  Hope our day is going as good as possibile becuase you all deserve it!
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boswife
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us and fam easter 2013

« Reply #1 on: August 03, 2011, 01:46:08 PM »

Doing well today ts, and thank you :)  It's amazing this life huh...  I gotta tell you right off, when i saw this post first i feared, then was happy to read.  We're in such a 'different' space than those who live with healthy loved ones.   And.........  I love your pic and this is funny so i must tell you...upon opening to this post,, hubby was flicking the tv to the music station and a guitar was playing.  I looked down and there you are.... playing.  It took me a min to realize that music wasnt comming from your guitar.  The timing was perfect.. I hope you play away your woes.. Music is healing. Well, it's hurtful to me oftin too.. It holds so much emotion and memories it seems..  Well, anyway, away i go, thinking and writing in circles.  I wish you and all our co-horts (is that really a word) and our loved ones well.  Enjoy all ya can while ya can  :flower;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
texasstyle
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« Reply #2 on: August 03, 2011, 02:11:15 PM »

How true that we are in a different space but you know, it's OUR space isn't it? Sometimes I want away from all this, but most times the good over shadows the negative things. I'm sure I'm like everyone else in that if the good wasn't majority, we probably wouldn't be around anymore.We "try" to  balance our lives  but life end up weighing all your options for you.  You take what you've got, you roll with the punches. But the best part is the fact we still have the oprrotunity to LAUGH with our loved one. We have today but no one knows about tomorrow for any of us. I mean, a giant tomato could fall from the sky tomorrow and splat all over us ending life as we know it lol lol. Take advantage of each and every minute and cherish it!!!!!!!!!
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del
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« Reply #3 on: August 03, 2011, 06:47:26 PM »

So true!!  Live each day to the fullest!!  Never know what tomorrow or even 5 minutes time will bring.  :cuddle;
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texasstyle
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« Reply #4 on: August 03, 2011, 08:24:05 PM »

I forgot to add that is funny about the music and the picture. It was probably wierd and confusing for a second lol. I'll tell you something a little funny. I've actually been on the radio BUT....(don't get too excitied) it was for my mother's talk show. A very local station (she was getting into radio broadcasting much later in life), she had her own hour long, once a week show. I played keyboard on a song someone else wrote that my mom played on her show. Not a good piano player myself but I was able to get away with just playing a couple basic chords throughout. It's kinda neat saying that "I was on the radio" though lol lol. Would be even cooler to say "I won a Grammy" haaa...  Have a great nite!
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lmunchkin
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"There Is No Place Like Home!"

« Reply #5 on: August 04, 2011, 06:57:23 PM »

Just checking in TS, to let you know all is well here!  Actually, very well at the moment, Thank God!  Would like to hear from Billybags, Looney, and Poppy and all others!  Thanks for asking all caregivers how they are doing as we do know that this can be very heavy on us!  We love our spouses and will always be there for them!  Yea it definately gets harder for us when this disease is so devastating that it takes their livelihood and they have to depend on us for almost everything!  And of course not to mention the financial acspect of it! I like to think that all us caregivers deserve a pat on the back every now and then!  I know that those who suffer this awful disease really DO appreciate us!

I love all on IHD and they have helped me so much!!  They are Family!     :flower;

Again TS, thanks for asking,
God Bless us all,

lmunchkin      :kickstart;

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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
texasstyle
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« Reply #6 on: August 04, 2011, 09:23:08 PM »

Yes, it's so important to check up on each other!  I too feel like "family" here. Richard Mel was one of the first persons I met here as well as as several others.  Everday I freak out slightly because I know that dialysis  is a "life suport". Sometimes reality slaps me in the face. I know you guys feel the same way too. I just came back from Karaoke across the street.  I totally stunk lol, but it was fun!
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Poppylicious
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« Reply #7 on: August 05, 2011, 04:41:01 AM »

Would like to hear from Billybags, Looney, and Poppy and all others!
Awww, I love getting a mention; it makes me feel loved! When I need support or understanding (or sometimes just a laugh) I come here because I KNOW that this is the one place where I can get all of that, that all of you know where I'm coming from when I whine and grumble (and feel frustrated and scared). 

Actually, I haven't done much whining and grumbling recently.  Life is GOOD in PoppyLand.  Blokey is off The List (because of October) but he may have MRSA (although nobody knows where he could have picked it up, except for at dialysis and they're adamant they didn't give it to him) so they'll start him on a course of antibiotics today (he's fine, has no noticeable symptoms, it just showed up in his labs last week).  The best thing that happened to us was when he went on haemoD with a fistula!  Really.  He has so much more energy, works full-time and is happily working towards getting a degree.  I'm just so grateful that after all the kerfuffle with the PD last year and the I'm not getting a fistula and they can't make me! moments we've ended up in this happier place.

Yesterday I had my very first ever pedicure.  Yes, I was a pedicure virgin, and now I am not.  I HATE people touching my feet.  Except, it transpires that I don't at all, and I really loved it. My tootsie nails are now a divine shade of Blue My Mind. I also had a scalp massage ... Oh, that was orgasmic. And this all occured within a couple of hours of seeing Harry Potter 7.2 so I had Severus Snape in my head (Mmmm, lush ... but sadly, dead.)

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
looneytunes
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Wishin' I was Fishin'

« Reply #8 on: August 05, 2011, 05:11:47 AM »

Right now, here in Looneyville, things are a little stressed but overall, I'm doing ok.  My daughter and grandkids are visiting right now and that helps.  I always enjoy playing with the grandkiddos and look forward to seeing them any time I can.  Hope all of you have wonderful days out there!   :waving;
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"The key to being patient is having something to do in the meantime" AU
texasstyle
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« Reply #9 on: August 05, 2011, 07:18:02 AM »

I like the sound of that, "Poppyland". Sounds like a place I wanna go to. Like an asument park or something lol. But,  actually I am living more in "Looneyville" lol. MRSA? Pleae Poppy keep us updated on that. That as you know can be a serious condition. Good thing they have him diagnosed and are starting some treatment for that. Is this antibiotic given to him through his IV when he goes for his dialysis or at home orally? I understand it is a pretty strong antibiotic for that.    AAhhh...family is great to have around when you need it. Some of you I have read have some struggles with your famiies  and I am always sorry to hear that, but I am so grateful that mine come together not only in bad times, butin good as well.
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billybags
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« Reply #10 on: August 05, 2011, 11:04:28 AM »

OK girls just checking in. This is a nice thing to do. It is Friday and that is  another week gone. Another bottle of wine gone. OK two. This week has not been as stressful, weather has been good so I have been relaxing in the garden with hubby. Nice to hear from you all.
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texasstyle
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« Reply #11 on: August 05, 2011, 11:52:29 AM »

Yeah, you finally found us Billy! lol  I guess you were busy the last couple of days out drinking wine  in your garden lol. I felt like it was suc a stressful week but here it it friday, everyone in the family safe and sound, and that eases things up knowing it. We have started a flower gardenthis summer in an empty lot next to us. Mostly Mike's idea, but it's coming along nicely. Whew, they sure are a lot of work huh? In my flowers I added some greek oregeno, rosemary, apple mint & orange mint. The day Lillies fizzled lol. I find it nice to go outside by my self and be alone amgonst them. I soooooo get why people like gardenening now.
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Poppylicious
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« Reply #12 on: August 05, 2011, 02:22:43 PM »

OK girls just checking in. This is a nice thing to do. It is Friday and that is  another week gone. Another bottle of wine gone. OK two. This week has not been as stressful, weather has been good so I have been relaxing in the garden with hubby. Nice to hear from you all.
Did you have nice weather yesterday?  It rained ALL BLASTED DAY (and we're talking heavy April rain, not nice sunny August rain) here in East Anglia.  My umbrella broke and I got soaked (white t-shirt and everything; gave the lads a thrill). It was the ONLY day this week we needed it to be sunny, a) for a salon garden pamper party and b) for a barbecue in the evening.  Wednesday? Sunshine. Today?  Sunshine.  Thursday? Tsk.

*rolls eyes heavenwards*

I hope you have another bottle of wine chilling in the fridge ready for tomorrow!

I soooooo get why people like gardenening now.
Ha, me too.  But only sometimes.  I've discovered that if I'm in the right frame of mind gardening can actually be quite therapeutic (as I attack the weeds usually.)

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
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« Reply #13 on: August 05, 2011, 06:32:12 PM »

Billybags you would like my house!!  We make wine and I have at least 200 bottles on hand now!!  :beer1; :wine; Right now I don't really consider myself a caregiver.  I think of myself as a partner in all this.  I know this role xcan change very quickly but for most of the 14 years he has been on dialysis I have been a partner.  I have nothing to do with hubby's diet. he knows what he can eat and sticks to it (most of the time). His diet is really good anyway with nocturnal dialysis but he still watches things when he has a night off.  I like hearing about everybody's day and how things are going.   :grouphug; to all caregivers and partners!!
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Mizar
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« Reply #14 on: August 06, 2011, 04:04:42 PM »

200 Bottles of Wine!!!  Can I come over for a Visit? You don't even have to be there, just leave the Key, under the Mat and the Key to the Liquor Cabinet too!!
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jbeany
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Cattitude

« Reply #15 on: August 06, 2011, 08:59:34 PM »

 :bow;
For all the caregivers....including mine....

I just sent my sister and brother-in-law, who are my doting, over-worked caregivers when I'm down and out, a $100 gift cert to the fabulously expensive restaurant they had dinner at the day they eloped.  I figure if they are taking care of my meals, I should take care of at least one of theirs...

My sister is drooling already, even though she called to yell at me that it was completely unnecessary.  Perhaps - but well deserved!

 :bow; :bow; :bow;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

texasstyle
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« Reply #16 on: August 07, 2011, 07:45:54 AM »

Oh how nice! Can I be one of your caregivers too? lol
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billmoria
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Living life to my max

« Reply #17 on: August 07, 2011, 09:31:58 AM »

 :oops;  Dave my partner (who has a genitic problem which limits his mobility among other problems) has had to do double duty these last two months as I have been in  hospital 25 out of 30 days days. Now that I am home he has do so much more. I am getting better each day. I can not wait to get better to pull my own weight around. Our partnership has always been strong. Now in our 14th year I would be lost without him. But 'LOVE CONQUERS ALL'   :cuddle;
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WMoriarty
boswife
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us and fam easter 2013

« Reply #18 on: August 07, 2011, 09:36:32 AM »

Glad your out and doing better and can get to helpen... ;)  So sorry for the long hospital stay..YUCK!!  hope it worked out in your favor for sure!!  Oddly, 'carrerers' <-----(geesh, thats the wrong spelling im guessing) dont catch much of an emotional break when our loved ones are away as we feel no one can do the care we do, so  guessing he didnt catch much of a rest in that respect either :(  But, sure hes glad your home and happy to be back to the routien..  and yes  "love does conquer all'   :cuddle;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Poppylicious
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« Reply #19 on: August 07, 2011, 10:44:07 AM »

I just sent my sister and brother-in-law, who are my doting, over-worked caregivers when I'm down and out, a $100 gift cert to the fabulously expensive restaurant they had dinner at the day they eloped.  I figure if they are taking care of my meals, I should take care of at least one of theirs...
I want to be your sister! 

Blokey's lab results came back negative for MRSA after all.  So now they're testing for it again due to the one neg and one pos result.  This is a relief because I had a minor irritant on my arm and Google suggested that it was MRSA. 

 ;D

I let Blokey sleep till just after midday. Whilst he slept I scrubbed the bathroom and kitchen and dusted/hoovered everywhere else.  The only reason I finally woke him up was because I was itching to get the bed sheets changed ...

:oops;  Dave my partner (who has a genitic problem which limits his mobility among other problems) has had to do double duty these last two months as I have been in  hospital 25 out of 30 days days.
Awww, hope you're okay, Bill.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
billybags
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« Reply #20 on: August 07, 2011, 10:56:23 AM »

Poppy that is good news. I must admit I am an internet Doctor. My husband hates me going in to see the neph with him because I ask questions. I ask lots of questions no matter what doctors he sees. I even query the tablets they give him. You take care of him.
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billmoria
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Living life to my max

« Reply #21 on: August 07, 2011, 11:03:51 PM »

thanks poppy and boswife.  have the pain of shingles to deal with - 3 hrs last night between 3 and 6 am. could not sleep.  :thx;

boswife  you are so right Dave had few sleepless nights while i was in hospital, he is doing much better now that i am  home.    :2thumbsup;
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texasstyle
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« Reply #22 on: August 08, 2011, 04:28:24 AM »

my dad had shingles and he said they were very painful and theylasted a pretty long time. From what Ihave learned about them is that they stem from the Chicken Pox virus staying in your nerve somwhere near your back. Later in life it comes out as shingles throughthe nerve that runs from your back and around your side? is that the same thing that happened to you in that same way? There is a Shingles vaccine available but it is 60% effective. they offer them at our local Walgreen's pharamcy. I always wondered how many people go them.
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lmunchkin
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"There Is No Place Like Home!"

« Reply #23 on: August 08, 2011, 04:44:00 PM »

Bill, other than the aggravating "shingles" aint it nice to be back home?  So glad to have you back and things are pretty much getting back to some normalcy for you & Dave!

BB, your hubby and mine sound like they could be "twins".  J. never says it but I know he gets embarrassed by my "doteing" over his care with Medical staff.  But you know, I don't care if he is embarrassed or not, he aint gonna change this gal!  I think he secretly knows that! LOL We do what we must, right?      :flower;

lmunchkin     :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
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« Reply #24 on: August 09, 2011, 04:17:21 AM »

I spent most of last night sobbing because of a little black growth I have on my thigh which has recently got bigger.  When Blokey came home from haemoD I sobbed that he was going to hate me because I wouldn't be able to give him my kidney.  I was completely adamant that it was cancer (my dad had skin cancer and I had a tendancy as a child to burn very quickly, easily and painfully.)  He insisted I show him.  Is that it? he said.  Yes, I wailed back at him. It's got bigger! (It's barely the size of a two pinheads.)  That's not cancer, he said.

He made me make an appointment at the doctors.  My doctor was running late so I spent fifty minutes sitting in the waiting room, fretting.  I was only in with him for about four minutes.

It's not cancer, he smiled at me. 

I can't remember what it is but it's definitely not dangerous. He's going to remove it this afternoon; he wants to pull it out and see what happens! (That fills me with faith!) Apparently it's not something that will disappear of its own accord so I can either let him yank it, or I can live with it forever.  He was going to do it there and then, but I'm a wuss and so he's going to give me a local anaesthetic. 

I am petrified, but it's good experience for October (in the 'having something done which is going to hurt, but will ultimately be worth it' kind of way.)

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
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