O, Hai there IHD crew

[Ladystardust24]

Hi there IHD folks,

As you probably can tell. I don't frequent the boards very much. If you met me in Vegas, you see I do better in meatspace than online. That's probably true in parts for most of my internet being. I'm not really on Facebook, If I am. I tend to keep to the same people I hang out with on a more or less regular basis outside of internet.

Despite my longing to actually tear myself away from my tech/internet self. I try not to spend too much time online. (I guess IM and such still counts) But, It's also a way I communicate with people in my life including boyfriend/family.

In ways, despite being not only from a computer age generation, I was raised around the concepts of technology and such as a whole. My dad was a part of the "internet age". And, in some ways, I dislike it. I dislike how technological we've gotten. It's at times replacing need for actual human interaction.

Such as,
If my boyfriend and I wish to do whatever, without each other in our day/weeks time. We still like to check in say through texts/IMing/and skyping.
Same goes for friends.

For family that I'm close to, that do not live close by to us, or even other countries, we can still see each other (Which, is a "better than nothing" idea). I guess, I should continue to my original point without going off about my longing for more human to human contact vs. all virtual.

When it comes to the kidney community. I feel at odds at times. I find the boards, helpful.. but also, considering I have a transplant. I feel in times odd being where the focus a lot is Dialysis.

And, I won't lie. Dialysis happens to be triggering for me. I am so forever grateful for it existing when I needed it. I had many hard, but life changing moments during my time on it. I grew up in it. And, I stil have many of the supports I found whilst growing up with it.

When I was on it. I promised myself I wouldn't just "abandon" my kidney friends. Something I had seen done before by so many. But. This is the thing; I am consumed by my life outside of my illnesses.

I have a life that my medical, even though exists, and is there. And everyone knows. It's no longer something that is so in focus. I take my meds, I do all of that. I lead many local things surrounding chronic/medical issues. I have somehow, combined my interest outside of my medical complexities, with it. For example:

I'm in charge of a workshop of intimacy and disability. And other perserving your "human self" while having to deal with things that at times makes us all feel, less than human. I work with the two local hospitals with that, and the new program that has started between my hospital and the adult one. To make those with congenital issues be able to transfer into adult care.

I have been doing many Occupy things, Specifically the GA dealing with how our country (USA, as I know many of you are not in this country) deals with those who have any medical issues/insurance. (I could go on about the whole Insurance coverage bureaucracy, but I'll spare everyone)

On top of medical influenced topics, I also am involved with many feminist things, GLBT organizations. (And so forth...) All of this on top of the life I am living. (family,friends,social things in general)
What I realize,

It's really been hard for me to somehow make a good balance between some of these things.I am very grateful and blessed that I have many people in my life that love me. That care, about my whole wellbeing, be it medical/own personal not medically related being. But at times, they *still* don't at times get what this stuff is. They can support me. My boyfriend can take a day off from his 9-5 engineering job to go with me to a appointment. He can comfort me when I'm not feeling well. All my friends can visit me when I'm in the hospital. They get the gist of it all. But, there's times, they dont get some of the pressures on me.

There's times I would like to talk to other kidney people. Perhaps, transplant ones. Because I won't lie. There's times, despite same/similar diagnosis, those at different stages of CKD, have their own issues. I have found I encounter a lot of "But, you have a transplant! why are you complaining!!"
 
  It upsets me, it drives me at times further away from a community, I wish to be a part of. One, I DO have things to contribute to. I spent my entire life doing this. I spent 5+ years on dialysis. That stuff just doesn't go away. But, Should I just be Okay and sit tight, because I have a transplant? Despite at times, not having anyone to talk about those difficulties? I don't think so.

I do wish to have a community I had before. Somewhere, someone, understands. They understand the fear. The worry. Because they've been there. People, willing to understand, and in return, I offer the same.

I also have to wonder, is it okay to perhaps "rant" about this, especially to maybe a community I have lacked to be a part of? Because I will be honest, from those I met in Vegas, to those I do keep in contact through other networks (Facebook and such) You guys were amazing. And I was so grateful for those words I got. Thank you. And, I hope that with 2012, and easing into it, I will be around more often.

I'm also planning to update more in "Kidney Hunnies" On facebook. (We do have a site, we're planning to do something, at some point. But, so far, I like to keep the page at least.)

Anyways, thank you to those who read this.


 

[MooseMom]

Oh Ladystardust, I'd be happy with anything you write, whenever you write it!

You don't have to justify how often/seldom you post or what you choose to/not to post about!  What you've just written is absolutely perfect.  That's exactly the kind of thing I love reading, and I stand and applaud all of the things you are doing to help other people with various issues, whether it be health issues, intimacy issues or issues of sexual orientation.  Good for you, and thank you so much for taking the time and making the effort to share this with us.

The role of the internet in your life is what you make it.  And that role can change, just as your life changes.  You may not need much support now like you did in times past or may yet in times future.  Again, you don't have to justify anything.

More and more people are joining IHD, and more and more people are getting transplants and post about their experiences.  We all are very much aware that life doesn't magically attain perfection simply because you've got a transplant, so we are used to post tx "complaining".  It reminds us that transplant is not a cure, just a treatment, and that is a very potent and useful reminder.

I am thrilled to bits that you have posted, and I hope you will give us more updates from time to time.

OMG..."meatspace".  That is just so totally brilliant!

 

[Riki]

I agree with MooseMom.  We're all in different stages, and have had different experiences.  I think you and I are similar, in that we started young, though, I believe you may have started younger than I did.  I think it would have been great if there had been some kind of liaison for those of us who "graduated" from the children's hospital to the adult hospital, to help with the transition.  Many people don't realize the start contrasts between the two.

For me, I was 12 when I got sick, and learned a lot of stuff about kidneys in a very short amount of time, had 2 transplants, and started hemo, something I never ever wanted to do, for the first time 3 years ago.  We all have stories that are the same, yet different, and our experiences help us to educate others, both online and offline.  I'm one of a handful in my unit that is asked to speak to new patients about the pros and cons of PD and Hemo, since I've done both, to help them decide which dialysis path to go down.

My point is, after all that, is that we all have a story to tell, and we do with it what we think is best.  Also, sometimes, when the need to vent arises, it's better to vent to those who understand, like us, than to family and friends who might not get it.  Just because you've got a transplant, doesn't mean you lose the right to complain.  It's not always as easy as it sounds

[YLGuy]

Mishy,
You know I think you are a great person.  You may be a lot younger than me but in many ways I look up to you.  Not just because you have a lot more experience with ESRD but more importantly your outlook on life.  Life how you view it.  You have a viewpoint that I believe needs to be shared not only within this community but most people could learn a thing or two from you.

[KraigG]

With a subject heading like this, I was hoping for a picture of a cat doing outrageous things. Guess I'm just 'ol skool.

[Riki]

With a subject heading like this, I was hoping for a picture of a cat doing outrageous things. Guess I'm just 'ol skool.

I'm sure we could find you one.... someone on twitter the other day posted a picture of a kitten clutching a large potato, like it was the only thing left in the world

[KraigG]

Perhaps a kitten holding a kidney?

Kidney Kitten?

Have you seen the jpg file of a cartoonish kidney make up to look like Hello Kitty, and the caption says, Hello Kidney?

I had that as my profile pic on Facebook for a while

[Riki]

Yeah.  I think someone here has it as a profile pic.

There are some neat things out there if you know how to look.  I bought a plush kidney online a few years ago.  When it arrived, I let Mom open it.  I told her that I bought a kidney online, but she didn't believe me.  Once she actually saw it, she laughed.  I get a kick out of telling people that I bought a kidney online.  Sometimes they're a bit taken aback, and they're downright confused when I tell them it's sitting on top of my tv. *LOL*

[KraigG]

Neat story!

Kinda like that guy who found his new kidney on Facebook. He found his kidney online, too! LOL!!

[Ladystardust24]

Hehe,

I think I might have seen this Kitten holding potato thing. I actually do have a kidney plush! My boyfriend got it for me last year for hanukkah! the tag says "when urine love!"" hehe. It's cute.

Kittens. Hehe, funny enough, I get called that quite a bit. Due to the fact I'm a weird dork, who's into geeky things, including cosplay and dressing like a "nekogirl" and regard myself as such. ^__^

But anyways,

Thank you so much. That's helpful to hear.

@KraigG
I have many health stuff, but I actually went into ESRD first at 11. I find it interesting how many people actually who got this early in life started around 11/12. hm.

[willowtreewren]

Mishy,

I, like Marc, admire your openness and honesty about yourself. It is quite refreshing! 

I am glad to see you participating again, but the bottom line is that you do this on YOUR terms in anyway that benefits you. 

xoxoxox

Aleta