Just sharing

[MyssAnne]

TW, 7 vials? Dang!!!  I'm really glad you had the car today!  I agree, they must be finally taking this seriously. Let us know how it goes
 tomorrow at clinic!

 I so hope your evening is quiet and uneventful, and very peaceful.  We need that, don't we?  That sense of peace and relaxation.

   

[The Wife]

Well, the doc is changing some meds, having him take in more fluids, and as far as the chills and the off and on fever, and extreme weakness, they don't know.  By the time they took the bloodwork, he had his last episode of fever and chills, and nothing showed. 

At least he slept well last night and isn't cramping. 

[MyssAnne]

The sleep is GOOD! Apparently whatver he had (flu?) is gone. More fluid, eh?
Will he stay on 1.5 though?  I was told to do another exchange, so I'm ding 5 on hte cycler,
which of course adds to the length of time. They upped it to 10,000 mls of fluid, two bags
worht. 

Any word on the PTH? DId they have any ideas/suggestions for his cramping if it happens in the
furutre? Is that why the extra fluid?

And TW, you're doing a wonderful job taking care of him, now take care of YOU!!!

 

[The Wife]

He'll stay on 1.5's and there was nothing said about what to do about the cramps, except to make sure he increases and keeps up the amount of fluid he drinks.  So I guess it's fluid that will keep the cramps away.  First they say, drink this much, then they say, no, drink this much.  I can't keep up!  One of the changes in meds was to double the iron.  That should pick up his energy level.  Or at least I'm hoping.  In regards to the pth, they're FINALLYgoing to give him a new prescription to replace the other one that he couldn't take.  What was that, two months ago?

Honestly, if I don't call and nag, call back and nag some more, nothing gets done.  And still it seems to take forever for them to make changes.  ARGH...

I'm in a bit of an agitated mood today.  Guess it's from all the stress and finally having a day to deal with my emotions. Just change meds and drink more.  Why didn't they try this two weeks ago?  No, instead, they said to wait until yesterday's blood tests and today's meeting.  Like he likes to suffer and I like to worry, plus get no sleep.

Growl....

The rest of the day is for me.  Well, not really.  Yesterday was LL's birthday and today I'm cooking a nice dinner for when his daughter comes over.  Yesterday I cooked up a feast when his other daughter came over. 

My neighbour poured a glass of wine into a jar and gave it to me to use in a recipe but surprise, there's an extra cup.  I'm not much of a drinker but what the heck, every now and then I deserve a cocktail.  It's probably a good thing I don't have a bottle because the mood I'm in would leave LL having to take care of me and a burnt dinner. 

Thanks MyssAnne for all of your concern.  Now you go and take care of you while I pound back my drink. 


 

[kitkatz]

Sounds like you are having some fun over LLs birthday at least, even though you had to cook.   

[kidney4traci]

I ma glad to hear that it wasn't anything serious at least.  And that he has such a good caretaker in you!  Sorry you seem to have to fight for everything, but at least you take an interest.  Wish him a belated happy birthday and hope you get some rest tonight yourself!   

[The Wife]

We don't do anything exciting for birthdays, especially with LL's energy level, but I love cooking and doing fancy things.  Having all those veggies really helped, plus all the other food I have in the freezer.  It's always great to see his girls.  I love them like they're my own and always have a great time just being together. 

Now that we have the lastest blood test results, and the doc is changing and adding prescriptions, I feel the stress I didn't even realize I was holding move out of my body.  One glass of wine kind of helps too.  But seriously, I'm exhausted and know I need some 'fun' time.  Well, tomorrow I will have the best fun.  I get to see my fifteen month old grandson and when we get together, all we do is play, play, play.  Oh yeah, and laugh.  That boy is my joy and if the weather is nice, we're going to go to the park.  He's started walking not too long ago and is hilarious and oh so cute to watch.  When he walks, he says, 'go, go, go...'  And of course, his grandma, walks alongside him saying the same thing.  Ah, bless his little heart.  All I have to do is think of him and my heart warms.

Thank You Everyone.  You've all been such a great help.   

[MyssAnne]

TW!!!!

Amd no pictures??? ANd you call youself a grandma??? Shame!!!!  You cannot promise a baby and not have pictures!!!!!

You have a DUTY, no, a responsiblity to give us upates, and pictures!!!!

Now, enjoy your evening, feel the stress leave your body (wine always helps!!)
and rest up for tomorrow's go go go baby!!

 

[The Wife]

Oh...pictures?  I don't know how to post.  If someone can help me, I'll post one but you have to promise not to steal him.  He's soooooooo cute!  He's got big blue eys, and well, really fine hair that just started to grow.  But the laugh and smile, and the hugs he gives, not to mention some of the other things he does.  One day, when I went to leave, he wanted to hug me.  So, I did what most grandma's would do.  Picked him up and let him wrap his little arms around me.  Everytime I tried to give him back to my daughter, he hung on harder.  It was precious.  He ended up hugging me for ten minutes!  But then again, I played with him for five hours that day.  Well, almost five.  We had lunch and a snack. 

He was born shortly after LL started dialysis.  In fact, we was overdue by ten days.  What an amazing time that was, life being extended for LL, a new life coming into the world, a new place to live, etc.  We finally moved into our apartment but had problems with the phone line for a week.  Once it was hooked up, he arrived in this world.  I always tell everyone he was waiting for his grandma to get everything in order. 

Can you tell I adore him?   

[MyssAnne]

I sure can!!!
 
I can't wait for my son to get married and have grandkis! Of course he's only 19 right now....

I love babies, my mama cat is pregnant, and I am just trhilled!!! 

Wha a wonderful experience, to have him come at such a time, he sounds so spiceal.

Give him a hug from me, and extra kisses!!  I loove that fresh baby smell too!!!

[Joanniebop]

TW, I am so glad that things worked out for you and LL today and hopefully he will be feeling better soon and you can relax a bit.
Wishing LL a belated birthday wish and hope that you and your family enjoyed the birthday dinner.

Have a great night!

Joannie

PS... How did the recipe turn out with one less cup of wine?
Cheers   

[kidney4traci]

Oh I love that age!  Too young for grandkids, but I always grab em and hug them at the office!  Have a great day and I am sure he will be the tonic you need! 

[The Wife]

I'm not old enough to be a grandma either but here I am, miss gramma.  The go go go baby was a bit low on energy himself yesterday but we still played.   Just not as hard.  That was okay though because I was tired.  One thing that is great with children at this age is you can do simple things and still get them to laugh.  The sound of a young child's laughter is beautiful medicine.  And books.  A gentle time together, reading, pointing to our nose, or teeth, or toes. 

The time spent with LL's kids was also gentle.  With a good meal to eat on both nights and sitcoms to watch on TV, our night resembled that of a normal family. Just hanging out, being together, and quietly celebrating, what LL calls, another year around the sun.

The recipe with the wine was great.  The wine I drank wasn't taken from the recipe.  Nope, there was one extra cup.  Lucky me. 

I do feel lucky.  Kids and a grandkid, a partner who has once again pulled through a difficult period, and nurses who heard me and took my concerns to the doctor.  An x-ray, an EKG, changes in meds, and a new day with robins singing outside my window.

Yes, it's another day and it looks like it's going to be a beautiful one.

[rose1999]

May all your coming days be beautiful ones too.

[Psim]

You have the greatest attitude, TW. You're a tiger when things are going wrong, but so ready to open up and enjoy the good times to the fullest. Your neighbours are great too -- how did they know you needed 2 cups?

I have a four year old niece who is just the light of my life, but she lives 8 hours and 3 ferry-rides away, so I don't get to see her nearly enough. Last year one of my neighbours' kids basically adopted me as her auntie and now I look after her one afternoon a week. I still miss my niece, but it's lovely to have that sweet, exhausting kid energy in my life.

[The Wife]

I have a tigger coffee mug that I purchased at Disneyland when LL's younger daughter was four.  Brings back memories of all of us riding scary rides, then deciding to split it up a bit when the younger child was too scared to go on the roller coaster. How many times can you ride It's A Small World?   Well, that's easy to answer.  As many times as the other two want to ride the roller coaster.  Not a problem.  Happy to oblige.  Happy to not have to get on a ride you know is going to scare the beegeesus out of you.  Good thing there's a small sensitive one around.

And good thing my sensitive self roared when the guy at Subway tried to squeeze oil on top of my sandwich. "Whoa, what's that?"  I asked.  "Are you serious?  NO, I don't want oil!" 

Oil, wine...how did my neighbour know a glass of wine would be appreciated?  And the car? When I told her I wanted to make her something, she placed her hand on my shoulder.  "No obligation," she said with a smile.  Ah yes, I heard those same words coming from my mouth when I helped her with her English.  Okay, I will accept without feeling the need to return your generosity.  But I will return it, not out of obligation, but rather, out of appreciation.  Giving, not to give back, but to give joy.

Ahhh, memories - scary times, happy times, roller coaster rides, and the moment when you see tigger on a cup, and you just have to have it.

[MyssAnne]

TW,

what a wonderful week it has been for you!! Babies, family, friends, acknowledgement, and the hope of another year for your loved ones.

 

[willieandwinnie]

You guys had to go and mention, "It's a Small World". I won't get that tune out of my head for days now. 

[The Wife]

Hubby's energy is better now that they've doubled the iron but he still gets the leg cramps.  They don't seem to come as often but they still hit.  What can you do?

After those few exhausting weeks in February, I became completely drained myself.  It just hit me.  And hit me hard.  For days I just couldn't seem to move and so I cancelled everything off my plate, took care of what had to be done, and rested.

Sometimes I just need to sit in silence, or stare at the ceiling and breathe.  And sometimes I just need a friend.  When my daughter called and told me she was cancelling her plans, I knew it was the perfect answer.  Her stomach was bothering her, and I was ready to step out into the world again. 

"Do you want to come over and just hang out?" she asked.

"You bet and I'm bringing the ingredients to make grandma's apple crisp."

It was the best few hours I've had in awhile.  My grandson's got the walking thing down pretty good. Walking and laughing.  Back and forth.  "Boo!"  Touching us with pure joy, laughter, and innocence.

Once he wore himself out a bit, my daughter read about the different programs she found in the community guide as I laid on the floor.  Of course, this called for my grandson to sit on my stomach, jump up and down and say, "nay, nay."  Does he really think I'm a horse?

"What's for lunch?" I asked as I got up to check on the crisp.

"Apple crisp," she replied.  "What else do we need?" 

She was right.  It really was all we needed but just as I was ready to pull out the bowls for the crisp with peanut butter in the topping, she remembered the soup she made the day before. 

"You have to taste this.  It's the best tomatoe soup I've ever had.  I found the recipe on the internet."

She was right again.  OH MY GOD, it was good, the best I've ever tasted.  I don't know how many times we both said how good it was.  We said it so many times we started laughing.  And then we had the crisp.

Things can get pretty rough sometimes but when there is a daughter, a grandson, the most amazing tomatoe soup you've ever tasted, and grandma's apple crisp, you know that no matter what happens, everything is going to be okay.

[MyssAnne]

You are so right, TW.

I'm so glad you had a wonderful day with your daughter and grandson!!!  He sounds so adorable!!!

I'm glad LL is feeling better, but the cramping is still going on? dagnabbit. 

As you say, breathe....just breathe...

 

[The Wife]

My grandson is adorable.  Melts my heart.

Yep, the cramping continues.  He had another bad night last night.  Another thing I'm wondering about is blood pressure.  Do you know why his blood pressure is always high in the morning?  Sometimes it's high at night too but the mornings seem to be the worst.

[annabanana]

I know you are The Wife...but the little girl in me wants you to be My Mommy.
Your words will see me through.
Thank you!
A.

[MyssAnne]

Hm. No. I can't think of why he'd have high blood pressure in the morning only, maybe someone else can chime in?

[The Wife]

Ahhh...Annabanana....

For the first while, I couldn't get away from thinking about death.  I was always thinking about it, worried about it, scared to wake up and find my partner no longer breathing....but then I realized I was focusing on a future event that has not happened.  Changing my focus, I started to see life, and to be grateful for another day.  I started to focus on the robin that sings outside my window every morning and the laughter of my grandson.  When fear grasped my heart, I would pull out a pen and piece of paper and start writing one-hundred things I was grateful for...and you know what, it helped turn my feelings around.  

I still get afraid sometimes, especially when there is a crisis period, but by reminding myself to breathe, I find my centre and remember the moment I am in, instead of the moment that is not here.  Find that which brings you joy and in the darkest moments, when fear grasps at your heart, bring that to your attention.  

Today, no matter what condition your husband is in, is another day of life.  Today the sun is shining, even if it's above the clouds, and today, you have the opportunity to share love once again.  

[annabanana]

Thank you!
I have found that "little" things have become very very big...
Every aspect of life.
I'm just learning to grab hold of these life-lines.
It's very surreal.
A.