Just sharing

[Psim]

TW, you deserve all the support in the world! In some ways it can be harder for the caregivers --  doing all they can, and feeling helpless to really change things. Hope that heating pad helps.

[KT0930]

TW, when I got cramps in my calves and shins, it would sometimes help to get up and walk around the bedroom. I realize if he's hooked up to the cycler that range is somewhat impaired, but even just a few steps in each direction, back and forth might help.

Sorry he had such problems with the quinine. My nurse also suggested a spoonful of vinegar - I think she said apple cider vinegar? - might help. I never tried it, but it's worth a shot!

[The Wife]

LL has an extension on his cathetar  and is able to walk around but sometimes, even that doesn't help.  One time, this happened in the day he wasn't hooked up.  I was out and he was trying to catch up on his sleep when he cramped again.  He said it was so bad he couldn't get up for fifteen minutes.  It's hard to hear when these things happen and I'm not here to help him. 

I'll get some apple cider vinegar the next time I go shopping.  Thanks ladies.  You are so awesome.  I tell ya, this site is a life saver for me.  Instead of walking in circles wondering what to do, I'll just walk to the computer and sign on here.

[MyssAnne]

TW,

Please keep us up to date, not only on LL, but you!  How YOU are doing!  I made dinner for my dad
today, he was thrilled to say the least!  I was tired, but it was a good tired. I'm glad I did it.
I may be physically sick, but he's severely depressed,  and doesn't cook for himself, nor take
good care all around.

Tomorrow I see my son!! Yay!!!  I get him all day, it's a holiday for me too!!! Yay again!!!!
And yes, I'll be cooking for him too!!!

Annie

[The Wife]

You made dinner for you Dad?  Wow, Annie, that's great.  I hope this means you're also eating well.  Sounds like you're having better days. 

Me?  I'm okay but last night at 11 pm we received a knock on the door.  Oh oh, it was the manager.  There was a leak and they had to knock holes in our bathroom wall to find it.  Only, it wasn't coming from our suite.  They said they thought someone upstairs spilled a pail of water.  Great. 

The problem with this suprise visit comes in the form of letting the cat out of the bag.  Literally.  Well, almost.  She wasn't in a bag but she did appear and now the manager knows we have her.  We left her on the smaller island when we had to rush back to this one when my partner started dialysis.  But when our friend couldn't keep her, we brought her back.  The problem is this:  It's a non-pet building but it was the only apartment left in the city when we arrived.   A lot of people here have cats, including the manager, but they changed the rules a couple of years back.  In order to keep our cat, we need a doctor's note.  For those who don't know this, the tenancy branch in Canada states that if someone needs a pet (to bring down high-blood pressure for example) they can have one.  The catch is that you have to pay a damage deposit.  We don't have that kind of cash.  Anyway, the manager didn't say too much because the plumber was here and it was late, but...today is another day.

I don't know what will happen from here but since we've already gone through so much and have learned that what we need always comes when we need it, I'm going to do the thing I've had to learn.  Trust. 

[Psim]

Hope you get to keep your cat! Maybe the landlord will just let it go, considering all you're going through.

[MyssAnne]

Oh, TW!!!!

 I so hope it goes well with the cat. I know exactly what you mean, they ARE needed
 for stress relief, AND!! they're our babies!!!  (In my case literally!!).

Let us know how it works out with the landlord and what she has to say.  Would there be
another apartment available by now? But the packing....ugh!!!! 

I think about you, and how you're doing. Darn it all. You need some good news in
your life!!

[Joanniebop]

TW, good luck with the kittie cat and keep us posted.
Maybe we can start a petition or something.
I have 2 that are my babies so I know how you feel.
Hang in there!

Joannie

[KT0930]

TW, so sorry to hear about your surprise visit! My cats, before they both passed several years ago, were my babies. They're absolutely irreplaceable! Hope this works out well for you.

Anne, great job making dinner for your dad! How was your day with your son?

[MyssAnne]

Katie, my day with my son was great....until my sister picked him up after she got off work (she lives in one town, works in my town!),
and he had my car keys!!!! The bum!!! My sister called and said she'd bring them by that night...this was at 9!! I was already hooked up on
the cycler, so I got off after my fill, turned on the porch light, opened the door for her, hooked up and fell asleep!  That was really soo nice
of her.

[The Wife]

Well, there hasn't been any word about the cat.  So, I'm going to assume, and hope, that she is letting this go.  It wouldn't be good for her to come to us with this today anyway, especially if it was something I didn't want to hear.  But, I'm going to take a breath and release unnecessary fear.  Our cat has been with us for ten years and she is going to remain with us for the rest of her life.  Period.

  

Oh boy, I'm charged this morning.  LL had another horrible night with the cramps.  All night long.  I found him sitting up this morning on the couch, asleep.  He said he only managed about an hour AGAIN.

So...I called the nurse.  Since we always get someone different, I told her about his reaction to quinine, the cramps, how he's changed the last bag to a 2.5 instead of a 7.5, etc.  He's now doing a twin bag exchange to get rid of the 2.5 by putting in a 1.5.  And he's to do all 1.5's tonight. 

What is pissing me off is this:  When she asked why he didn't go to the hospital when he had his reaction to quinine, I told her.  I told her I called the pharmacist and he said he didn't have to go.  I told her that getting him to the hospital is not an easy task and to sit in ER for eight to twelve hours when you're sick, just to be sent home, is the reason he didn't want to go.  And then there's his weakened immune system and how he always seems to catch something whenever he goes to the hospital by catching something.  There's all the flu's and stuff, plus MRSA is rampant in the hospital and if he gets that, he won't survive.  So &*)&(*7 them!

It sounded like she was mad at me for not forcing him to go.  And then she told me I should have called the Renal unit at the hospital.  Well, we've done that before and all they said is,"if you're concerned, bring him to the hospital.'  Of course I'm concerned, that's why I'm calling for your advice."  Their advice isn't something I didn't think of myself. 

Can't they for once put themselves in our position.  Can they imagine what it's like when you don't have the money to call a cab or pay for the ambulance, or put him over your shoulder to get him in the cab, or sit in the ER to catch their bugs, just to be sent home to deal with on your own AGAIN! 

Okay, I'm done ranting.  And I'm tired of being gentle with them so that they give him proper care.  ARGH...

Breathing.....

Sorry to hear your sister showed up after you hooked up Annie. 

[MyssAnne]

Oh TW.

Darn darn darn.  There HAS to be something to alleviate LL's cramping. Darn it.  I know exactly what you mean about the medical profession
not understanding what it takes to haul someone sick to the hospital, only to sit there. For hours. Exposed to other people's infections and
germs.  THEY don't get it. Grrrrr...  You did the very best you could do with what you had at hand. Quite frankly, it would have made it a
lot worse if you had taken LL to the hospital, he would have been so uncomfortable as well as being in pain.

I'm crossing my fingers that the landlady says nothing about the cat.....

As for my sister, well, she was returning my key that my son had taken with him. I NEEDED that key!!! It was my car key AND my house key!!!
Gotta have those!!!!  I don't normally leave a light on outside, unless I know someone is coming. I'm weird about that, I like it pitch black when
I sleep, and I can see (or THINK I can see) the porch light from my bedroom, which bugs me otherwise!

[The Wife]

Exactly!  They seem to not have a clue in regards to certain things.  You're right, going to the hospital would have been hard on LL, not to mention all the germs going around.  Do I need to remind them that he has Hep C and what that means?   Honestly, sometimes I don't know about these people.  I recognize they have a job to do, and that's just it, it's a job.  This is our life!  I responded on Petey's post and what I said is that we know our hubby's better than anyone, we have our intuition, we live with this, and even though the medical team may think we're complete idiots, we as caregivers and spouses are THEIR lifeline to their patients.  Oh, get me my sword.  The warrior has come out!

In regards to your keys, darn it, you do need to have those, especially when you have to get in to hook up! 

Oh, I think a few of us need to rant today.   Goofynina is laid to rest today and even though I've never spoken with her, I can almost here joining us in this rant.

[MyssAnne]

Ya know what?  I had a feeling almost of anger all day today. That's why. Because of GoofyNina.  I'm still angry she's gone.

Thanks for saying something TW, so I could recognize it. I hate that, when I have feelings and I can't place just why I have them,
or really, what they are. 

I'm cooking (crockpot!) for a friend here at work, her dad is dying, 2 hours away (close to my fiance's house), and she is leaving Thursday to
take family there from the airport.  I told her I'd make a simple dish, since there would be so many people coming and going.  Me, I was
indulgent and bought some crab. REAL crab (at a discount store!), and will have that tonight. I need some cuddling, darn it, and good,
tasty food will do that for me.

Oh man....if I had not had the keys to get in..not good!!! It's hard enough waiting til I get off work to do my exchange, I can't imagine not being able to do it at all!!!

[The Wife]

I think it's important for all of us to recognize the stages of grief, whether we spoke with Goofynina or not.  Everyone here is personally touched by kidney disease and dialysis, and to hear that someone in this dialysis community passed away is going to affect each and every one of us.  I know it has me. 

I'm sorry to hear about your friend's dad.  You are so wonderful for cooking and helping out, giving the hug they need.

Here's one back to you...oh heck...take a few....

 

[MyssAnne]

TW!!!

I needed those!! I didn't realize it til I saw this, but I really needed those hugs!  Thank you!!!

And back at ya....

 

[The Wife]

Glad I could be of help.  And thanks for the hugs back. 

[petey]

Okay, MyssAnne and The Wife, send me some hugs, too!  Here's mine to you ... 

I get frustrated with MOST of the medical profession -- they don't listen to me, the caregiver.  They don't listen to Marvin, the man who knows his body the best!  Damn it!  (Marvin's vascular surgeon, however, does NOT fit in this category.  He always listens.  He always asks for our input.  He's great, and we love him.)

I'm missing Goofynina, too.  Even though I've only been posting for a couple of months (lurked around for a few months before that), I really liked that chick.  She was one-of-a-kind.  What are we going to do without her?

[The Wife]

Here we go Petey, these are for you:

 

What are we going to do, you ask?  We're going to remember the vibrancy of Goofynina, we're going to carry on and make the best out of the worst, and we're going to be there for each other. 

Last night, while in the grocery store, I noticed the colour red on different items.  They were from Valentines Day.  As I stood there, I thought of Susie, of her passing on Valentines Day, and of the boa around her neck.  I've always wanted one of those boa's and remembered the red one I saw in the store when I was hanging out with my daughter as she shopped last week.  My mind started to swirl and all of a sudden, a thought came to me.  BUY ONE!  Wear it for Goofynina, pass the word to the other women at IHD, and when we need to, put it on, laugh, celebrate life, and honour all we go through, all who have been given an extended life because of a machine, and those who have passed on.

As soon as I can, I am going to buy one.  I'm going to wear it to the community center when I attend the woman's group that has been set up for women to nurture each other through difficult times. 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, always brought love, laughter, and inspiration into the lives of others. 

I hate dialysis, dealing with the medical staff, the boxes, and this illness, but without all of it, my partner wouldn't be here today.  When I get angry, frustrated, or just plain sick and tired of it all, I remind myself that every day my partner is alive, is a gift.

We ARE going to carry on, and we're going to do whatever the day calls us to do.  And somewhere, a beautiful woman with an angel white boa is cheering us on.

 

[The Wife]

And Petey, you're not alone with your frustrations.  Ummm...maybe we should wear our red boa's when dealing with them.  Hold our heads up high, flick one end of the boa behind us, and let them know,we will do whatever it takes to get their attention!

[petey]

I gotta get me a boa!    Do you think Goofynina would understand if I wear a pink one (pink's my fav color)?

Sluff -- can you get us an icon with a boa?

[The Wife]

I think Goofynina would want us to wear whatever colour we choose!  Gosh, I'm wishing I was closer to where everyone is having the walk.  Can you imagine everyone wearing boa's? 

I second the motion to have Sluff find us an icon of a boa. 

[MyssAnne]

FIrst of all. Petey:

 

TW, I LOVE the idea of boas!! Purple for me.  I'm a purple kinda gal!!! 

I thnk Goofy would be so tickled to know we were carrying on her attitude towards life!
It's a wonderful way to remember her, and her impact on us.

And some more

 

[petey]

You girls are the greatest!    that's why I love this site!!
Now, do we need a "name" for all boa-wearing women from IHD ? (and let's not restrict it to just females -- I think that Sluff or Boxman could possibly be awfully "cute" in a boa!)

What do you think?
...Goofy's Girls
...BiBs (Broads in Boas)
...The Queen's Chicks

Help me, here.......

[Ohio Buckeye]

Let me throw in some                    for you also.
Can't get too many hugs.