Hello

[The Wife]

Have you ever had a lot to say but when someone told you it was your turn to speak, you stood there not knowing where to start?

I think I'll just sit for a moment and look at all of those great icons for awhile.

Cool.  I don't have to say anything.  I can just post one or many of those cute little guys that are at the top of this page. 

Oh, I like the punching one.  Yep, know that feeling well.  It pretty much explains how I felt when told we needed to go from one island to another to stick a tube into my hubby's neck and then plug him into a machine I've never seen before.  I don't know if there's an icon that says numb and terrified all at the same time but there ought to be.

I see there's one waving the Canadian flag.  Okay, could use that one.  The one whispering while the other has those big, slow blinking eyes also works.  It pretty much expresses how I've felt at times.  You know, don't talk about the hardship or the pain too loud and when you do, watch their eyes move extremely slow.  People don't like to hear about it.  In fact, those that claimed how much they love your hubby but never, not once, call, visit, or even ask how's he's doing, well, the punching icon has a couple of uses I see. 

Oh, and then there's the guy holding the sarcasm sign.  Not me.  Never.  Well, maybe once.  That icon reminds me of an ex-friend who told me not to be rude because I told her I didn't have the energy to go over everything we've gone through just so she could have some gossip to talk about at her luncheon.  (Maybe if those ladies would have given me a group hug instead of getting mad at me for not attending their stupid lunch, I might have been a bit more gentle.)  But hey, my husband was going through hell, and I was just a wee bit tired.  Know what I mean?

I see the rant icon.  Is there a thank you guy to go with that?  If it weren't for my closest friend who simply listened to all of my feelings, I don't know how I would have managed hubby's first year of dialyisis.

Where's the icon with one person giving the biggest hug to a whole bunch of people?  That icon's for all of you.  I've been coming here for months and reading. I've learned more than I could have ever expected, and received comfort when you didn't even know I was here.  I've found answers to what my hubby's pain was about, those horrible cramps, PTH levels, mood swings, etc, etc, etc.  You have no idea how much help you've been!  And during the times I thought nobody truly understood what I was feeling, I found the spouse/caregiver section. 

The courage in which all of you share your journey of dialysis has touched me deeply and carried me through when nobody else was around.  I hope that by joining this community I can give as much back, if not more, to all of you.

Oh yeah, I almost forgot.  You know Lightlizard?  I'm the wife.
 


And I thought I didn't have anything to say.

 

[Rerun]

Welcome Lightlizard's Wife.  Welcome to the IHD Family.  I'm glad you found the site helpful.  Nice description of the icons.  I look forward to your posts.

[Ang]

 

[Mimi]

Welcome, welcome, LL's wife.  Come right in and make yourself at home.  We talk about everything so just jump
right in and tell us all about yourself and your wonderful husband.  He wants to be a cynic and I'm trying to convince
him not to.  LOL

Love, Mimi
 

[The Wife]

Thank you for the welcome.  I already love this site and the support that everyone shows. 

A little tip for you Mimi: If I'd had the icon with the head banging on the wall instead of having to use my own head, I wouldn't have the bruises I've had from trying to convince LL of anything.  (I believe this is where the sarcasm icon goes.)

Just kidding.  It'll be three years come April since he first became ill and he really needs to get out and touch the earth again.  He's an incredible percussionist but he can't play where we live and he needs to drum!  As an artistic person myself, I know how important it is to be able to express ourselves creatively.  This man used to be full of energy, so much that I had to tell him to settle down.  He used to make me laugh, oh my, so hard I'd nearly pee my pants.  Actually, I think I did once.

To tell my story, I need to go back seven years.  My mom was diabetic, had a heart attack and needed a transplant.  After two and half years of being in and out of the hospital, she went into End Stage Renal Failure and passed away.  A year later, I was downsized and LL showed his first symptoms of what would eventually be diagnosed as Hep C.  Another heavy weight was on our shoulders.  The leaky condo.  After eight years of paying a mortgage, the thousands of dollars bill to fix our home arrived at the same time as my last ei cheque.  It was a heartbreaking and angry goodbye.

Just when we thought things were picking up, LL's health failed to a point that left him bed ridden for seven months.  Finally, he agreed to let me call the ambulance.  (Add several head banging icons here.)  I've never seen anyone so afraid of doctors but once in the hospital and 14 litres of fluid drained from his body, he realized it was the best place for him to be.  This was the first hospital stay and the same time we found out that his kidneys were working at twenty-five percent.  I didn't have a job when all of this happened as I was still trying to deal with the previous losses and simply needed time to grieve, find myself again, and just be.

Within a short time, I found myself pulling pop bottles out of the garbage to find the money to pay for his medication or food.   Being the only one to care for him and sleeping only two hours a night, I really don't know how we survived.  This is definately where the angel icon comes in.  Actually, a few angel icons would be needed.

Somewhere along the way we moved from the big island to one of the smaller ones.  I thought I could start over, take care of LL, and create a simple but beautiful life for the two of us amongst the cedar trees and families of deer.  LL picked up for a bit and soon we were laughing again and picking plums off the trees while the deer joined in for something sweet.  He seemed to be gaining his strength back and was starting to walk a little.  Then one day, he wasn't doing anything again, there were the headaches, the itch, and the screams in the middle of the night.  His kidneys dropped quickly and that was it.  The dream was over.

On October 4th/2006, the doctor's called with LL's latest blood tests.  He was now in end stage renal failure, we were on the next ferry, and in the hospital the next morning.  The rest, as they say, is history. 

Sometimes I wonder how it is possible to go through so much for so long.  I wonder how it is that we can endure such hardship, heartache, or illness. 

And then I come here, or think of the social worker at the hospital who hugged me and told me we'd get through this together - and meant it.  Or the women at the Easter Seal house who welcomed us with loving hearts, and the Kidney Foundation who paid for the two of us to have somewhere to live until we could find an apartment and start again.  I think of everyone that has shown kindness or secretly left a bag of food at our door when we had none.

During these past seven years, I've learned that life can sometimes be harder than one can ever imagine.  I've also learned that through these painful times, we get through by being there for each other. 

Thank you for the welcome and for asking about us.  It's nice to have a place to come and share with people who truly understand.   

[oswald]

 

[Joe Paul]

Welcome Lightlizard's Wife, good to have you aboard.

[Sluff]

Warm welcome to the Wife,

I'm glad you made your way to us and that you enjoy IHD. We do try to make this forum a warm friendly place to come and use as a resource for anyone who is affected by ESRD. feel free to browse the entire site and don't be afraid to ask questions. The really nice thing about IHD is you can ask a question and if one person does not have the answer someone else does.

See you in the forums.

Sluff/ Admin

[willieandwinnie]

The Wife. Wonderful post.  You have found the greatest support out there. We look forward to hearing more from you.

[Hawkeye]

Hello and  sounds like you and Lightlizard have been through alot together.

[lola]

  I felt like I was reading my life, I also am  "the wife" so I know all the emotions you spoke of. IHD has been a life saver it's like a family who "gets" it.

[The Wife]

Thanks everyone.  I probably shouldn't admit this but as Lola has said, IHD is like a family who gets it.  After I read your responses, I broke down and cried.  I wasn't expecting that kind of reaction from myself but guess I needed it.  At times, this has been a lonely journey.

Hugs...

[paris]

Your posts were beautiful. You certainly have a gift for writing. We are so glad you posted and have officially joined this wonderful family.  I don't know where I wold be today if I didn't have this site to go to.  On bad days, I can dump everything here and everyone knows why I am in such a bad mood. On great days, everyone rejoices with me.  I am a different person than I was 3 years ago.  My husband has a hard time with that some days. This disease changes your view on living.  You will be such a great support for LL because when he tells you what is going on, you will know that their are others with the same experiences.  My daughter is a member here, and it has made her more aware of my situation than the rest of the family. She has an easier time "getting it" and there is so much information here for her to read.    Welcome home---we've been waiting for you

[kellyt]

    So glad to have you and your husband around.   

[The Wife]

Oh Paris, you touch my heart.

And thank you Kelly.

it's been a long journey
one that continues on
the road has been long and winding
rocks and storms have rolled

sitting for just a moment
to take in the kindness of strangers
though strangers not at all
lifting my plate for the offering
nourishment fills my soul

[donnia]

Welcome LL's wife!!!!   

[Wattle]

   Welcome "The wife"

Your posts were beautiful.  On bad days, I can dump everything here and everyone knows why I am in such a bad mood. On great days, everyone rejoices with me.  I am a different person than I was 3 years ago.  My husband has a hard time with that some days. This disease changes your view on living. 

I totally agree with Paris. I have changed so much in the last 3 years...... and I can't say it's been for the better.    Sometimes I really don't like the person I have become. When I log on to IHD I feel understood and "normal". I wish my husband would read the posts but his head is too buried in the sand to take it all in. He is a great support to me, but he really doesn't "get" it. Your support will be everything to LL.

   Glad you found us!

[Steve-0]

I've read your posts and been to LL's webpage - and I find your story amazing.

My girlfriend has been amazingly supportive to me - I couldn't do this without her... so I wish to say "thank you" to you for all your support to LL.  It's not an easy road, and I wish you two happiness, success and health in the future.

~Steve

[LightLizard]

thanks steve, and all the best to you and yours, too!

i know without a doubt that i would not be alive
if not for my wife.

[Bajanne]

Welcome to the community!  Wow, I just loved that intro!  I am so glad you joined us and I look forward to more of your particular brand of expression. It's like if we have a LifeOnHold back with us - [see http://ihatedialysis.com/forum/index.php?topic=66.0 ].  So take advantage of all this site has to offer.  Keep reading, but PLEASE, keep posting!!!  Let's have your own particular spin on things.  I am really looking forward to that.


Bajanne, Moderator

[Deanne]

 

[The Wife]

Wow.  Thank you for all the welcoming.  I will post around on the board when I have time.  Been busy lately and last night LL's cramping, oh boy, I don't know how any of you do this.  It's torture just watching it!  Makes me want to cry.

I'll be searching for the post with cramping on it when I return.

Love to all of you.

[snakesraiders]

I have a question? I have to drive 90 miles each direction to train for home Hemo with NXstage does anybody out there know of any goverment or private assistance ti help pay for a motel room so do not have to pay for all that gas expense?

[snakesraiders]

HI My name is Willie. I have been on dialysis for two years I'm switching to home hemo because I live were it snows and I have to drive 90 miles each direction for treatment. So I'm going to switch to Nxstep.....Wish me luck   

[Mimi]

A little tip for you Mimi: If I'd had the icon with the head banging on the wall instead of having to use my own head, I wouldn't have the bruises I've had from trying to convince LL of anything.  (I believe this is where the sarcasm icon goes.)

HaHa you certainly have your hands fulll.  But somewhere in this man there is good.  I see it flowering all around him.
I just want to find it and show it to everyone else.  I would llike to see him with a joyful heart.  What is it that brings
healing to the emotions, healing to the soul?  A joyful heart.

Much love and good wishes to you both,
Mimi