you're all probably going to get mad at me....

[angellady07]

You have every right to be angry. I can tell it's never easy warning or not. Take care.

[GuyIncognito]

I know only too well what your feeling,
I had a pre-empitve transplant when I was 22, however a medical ****-up caused me to loose that Kidney (A donation from my mother) and landed me on dialysis... a situation I wouldn't have been in for another 2-3 years. So though I can't relate to the shock of your situation I can on the other hand sympathize with being too young for dialysis... no offense to anyone over 50 but when you are the youngest person in the unit by roughly 30 years it's hard to relate to people... I did my time and leave not unlike a jail sentence - but on the flip side I found myself more and more isolated from my friends who couldn't understand the person I was didn't exist anymore.
The only person who has gotten me thru the last 5 years has been my girlfriend (soon to be wife) and now our daughter who has given me a reason to get up every morning with a smile on my face.
I wish there was some tidbit of info I could give you that would make everything seem alright, it does get better and I have accepted that it's not a situation I can change or control, sometimes it helps to compartmentalize dialysis and remember that though it's part of our lives it is not the whole thing.

[poohkari]

Thanks for all the support, everyone. I really appreciate it.

I'm just really angry lately. I'm mad that i'm 24 years old, and I feel like I can't go out and live my life. I'm living Wade's life. I'm working a lot more than I was before he got sick, and we've got a lot less money. We had to move out of the city and into the 'burbs, and we're so distanced from our friends that I really don't think they exist anymore. I can't remember the last time someone called us to invite us to go do something or just hang out. I'm afraid that i'm really starting to resent Wade and this whole sickness/support thing. My life has been just as messed up as his has - i've been there since the very beginning through it all. I know I will never completely understand how he feels every day. That makes me guilty. However, he has a reason not to be living a normal life - he's sick. My reason? My boyfriends sick. I'd never dream of leaving him (okay .. not going to lie, i've thought about it for about .0002 seconds and immediately vetoed it) but I feel like I need a break from all this! Agh!

I'm just so sick of having a damn pity party all the time. Also, i'm sick of sucking it up and making the best of it as well.

[MyssAnne]

Yup. Life can be a bitch sometimes.  Kari, can you call someone or heck, even just take off for an hour or so and go somewhere you really like going?  For me, it would be a bookstore. That kind of thing. By all means. VENT here. That's why we're here!  You have a double burden, yours PLUS Wade's.   Hang in there, and I so hope you find someone to vent it to, in person. Someone who understands what you're going through.

[KR Cincy]

I know that my wife went through a lot the same emotions you are going through during the first half of this year while I was in surgeries, recovery, and starting dialysis. She told me a couple of months ago how alone she felt through it all because, for the most part, I just wasn't fully there with here...I was sort of lost in my own world of fear and survival. I will tell you it's better now...it's not perfect or even back to where it once was, but it's getting better as we both adapt to the new definition of normal. She relied a lot on family, faith, friends and eventually, a counselor. We didn't know about IHD or I'm guessing she'd have been on here as well.

You can do it...keep venting...

[2_DallasCowboys]

Carrie,
You are going thru dialysis mentally.  You live with this damn stuff every day.  So do I.
Even tho I am not as young as you are, believe me my life was turned upside down with
this sickness.  It is a very emotionally draining thing.
Always know that it is good to be able to "tell someone" about how you feel.  Your feelings
and thoughts are very important.
You have a wonderful support network here with others who are going thru the same
thing.  It does seem like our friends, mine included and even family cannot begin to
understand what this desease can do to everyone it touches.
Be strong, and try to make some time just for yourself.  It can really help

Anne

[George Jung]

Kari, I have had to find the positives, the good stuff, associated with my life that could very easily be a 24/7 pity party and it is not always easy.  I'm not sure how it is different for a caregiver v.s. a patient but I think we are all in this somehow for a positive reason, you included.  I don't think it is something anyone can tell you that is going to have you realize what that reason is, it is just something that you find along the way.  There is much to be learned about ourselves when everything has been taken away, I know, for example, that I take nothing in this world for granted.  I stand over the toilet and enjoy taking a leak, and I'm not talking about the kind of enjoyment that you feel when you've been holding back some beers waiting for half time at a football game.  I appreciate the simplicity of the function, the basic ability that who would ever really consider. 

You too Kari will learn many things about yourself and others as well that will make you who you are for the rest of your very young life.  As difficult as this is I hope you can find a way to embrace what you are going through, take hold of it, controll it and make the best of it.  You can look at it like a bad customer...right....you can bitch about the customer all you want and it just makes the time worse for you but you still have to wait in them and they aren't going anywhere so why not find something good about being stuck with them and in the end you may get surprised that they wind up leaving you a 25% tip, or better than that even, you actually found something enjoyable about their stay.  It is very easy to act on negative emotion and although sometimes necessary (we all know I have done that) but much more beneficial to control that emotion and use it toward something good.

I envy Wade, not because of his condition obviously but because he has someone like yourself dedicated, by his side through it all, through ALL of the shit (and there is a whole lot of shit) and I admire you.  You have what it takes Kari and if you take your time and pay attention to the rightthings you too will benefit somehow, someway from this time in your life.  Again, if you look for the basic goodness of your life and focus on the positive things, embracing that you can control the outcome.  I don't know why I feel compelled to say this but I do so I am........I love you guys (not the kind of love between you and Wade, oboviously, but love none the less), I think you are awesome and I have much respect for what you are to Wade.  Please take care of yourself first though, if you are not feeling well you are not going to be any good for Wade.  Thinking of you in a positive way, today and many other days.  Take care - George

[Sunny]

Kari, my heart goes out to you. I'm 7 years post Goodpastures disease. My 6 mth treatment left me with 30% kidney function, which is enough for me to survive without dialysis for now. I cross my fingers every day. But regarding my husband, and how he manages. I fully expect him to to go on with his life doing what he usually does. I know it's hard for him sometimes and he is very strong, as you are. But he continues to work and goes on his bike rides, fly fishing trips, ski trips, the works. I have a 19 yr old son and 16 yr old daughter and I fully expect them to carry on with their lives too. It would be easy for me to expect pity and central attention due to my disease, but I work hard to avoid that. It has meant refraining from too much talk about how sick and weak I feel at times. But I want people around me to lead normal lives because life goes on. I gues what I'm saying is that you need to carry on with your life. You can still be there for Wade and love him as you always have, but you need to get back to your life too. Continue working and pursuing a career, continue your favorite pass-times. You can do what you want and still be an excellent partner to Wade. Yes, you can have it all. I wish you well.

[kitkatz]

Sweetie, I know how you feel.  This is a hard road to go down.  I am angry at times, too. I think it is a natural reaction to a lot of the crap we have to deal with every day.

[poohkari]

Thanks everyone. I'm just so tired of dealing with all of this. I know Wade is too - and that's why it's been hard. He feels like hes holding me back, I feel like i'm not beign good enough, and we're both being the best we can be.

Now that he's ended up in the hospital, it's all fight mode and we amaze ourselves - we're unstoppable! 

[okarol]

  Hang in there baby!

Good enough is good enough - you two are doing great - keep fighting 

[Sluff]

It's a tough row to hoe Kari but your love will see it through. I know it sounds all good and all but I believe it. Just hang in there girl...knowledge is power. I wish sometimes we could be there in person to give a hug but a cyber hug it will be