Is anyone else alone??

[RichardMEL]

Richard I think its awesome that you are so positive. I agree with you about dating someone with cdk. On one hand you know your partner will  totally understand what youre going through, but at the same time it might get dificult if you are both going through a rough time at the same time. I guess im feeling a little hopeless about dating in general or ever meeting someone that will be able to handle my medical issues. At this point i guess it doesnt matter because im not even feeling good enough about myself to really let another person into my world. Anyway, I appreciate your positivity!! Its awesome and gives me some hope!!

*blush* thank you! Flattery will get you everywhere... wait, are you chatting me up?!! 

I TOTALLY relate to your comment about being worried about meeting someone that could handle the medical issues as well as not being able to feel good enough about yourself to let another person in. I've experienced both of those.. and also the feeling that it would be unfair to even go looking for someone and drag them into that whole world of worrying and stuff... and then on top not being a very good "date" due to complications of dialysis/CKD (like being too tired to go out or whatever or restrictions getting in the way, or even problems of a more intimate nature)... In this respect a fellow kidney patient hopefully WOULD understand those issues.

However I also learned a few things over my time both pre- and on dialysis - some women said to me that they wanted to take the chance to get to know me and be involved.. that I shouldn't make that decision to "protect" them from me - that it should be up to them to decide if they want to go there or not - which makes some kind of sense - but then how much more hurt is there if they turn around and say "well actually no this is just too much for me" A few others said they didn't care.. it was me they wanted to date and not my disease (wait this makes it sound like I've been with a heap of women..  ).

I think you've really hit a key issue on the head - if you're so wrapped up in your own struggles and not liking who *you* are because of the issues from dialysis - ranging from the physical like fistulas and being tired all the time and not feeling very attractive to emotional then yeah, dating's not going to be a great idea.

A dear friend to me said to me just the other night that one of the things she really likes about me is that I have a generally positive attitude and a quiet confidence (?) in my voice and manner and that that, to some, is very endearing. I'm not saying everyone can find someone if they just get positive... but I can definitely see what she's saying that potential partners will see those kinds of things as appealing rather than someone who's so wrapped up in their own stuff.

Just a few thoughts for what little it's worth.

[noahvale]

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[RichardMEL]

Great post. Thank you. 

[casper2636]

Beautiful post. You brought tears to my eyes. How lucky you were to know such love and admiration and have that insight.

[Meinuk]

 

Great Post Noah. Thank you for being so open and sharing.  I've finally come to the resolution that Love is Love.  It comes in all shapes and forms, and we have to get it and cherish it where and when we can.  I did my dialysis/transplant journey all alone by choice, probably because I was scared to have to trust and rely on someone when I was at my neediest.  I am still quite proud that when I was discharged from the hospital after my transplant, I walked out of the hospital carrying my bags, walked a couple of blocks to Broadway and hailed a cab to go home. 

I always tell people that the physical aspect of this disease is NOTHING like the emotional aspect - for me, it is the emotional aspect that is crippling, I can always take tylenol for pain, but what can we take for emptiness?  I think that I am right behind you on the advocacy front. I laughed to myself when you said that you had worked for the Network - I was wondering how you were so informed when I read your posts!    I just pulled the plug on a lobbying trip to go to Disney World.  (I have never been to Disney, so there is that). 

As far as dating other people with kidney disease, well, that has been a conversation.  My thoughts are that if you are lucky enough to find someone that you want to be with, it is what it is. My first serious relationship ended because I would not have children (I have PKD) and because my life expectancy was low, and he was not emotionally prepared to deal with losing me.  It is now 20 years later, and he and I are just now talking about who we were then versus who we are now.  I am lucky that I not only have closure from that heartbreak, I also now have perspective.

We are in TOTAL agreement on the NKF - which right now is a serious conflict of interest for me since I am working as a COC, part of professional advocacy is playing well with others (even when you don't respect them), and well, that is not a strength on my resume.  Noah, I feel your pain!

Ok, I will stop rambling now, and just finish with a heartfelt THANK YOU for sharing, and I look forward to reading more of your posts. 

[cdwbrooklyn]

Question? Would you date a guy with a kidney transplant?   

Knowing myself, I probably would date him as long as his transplant don't fail.  Now if I fall madly in love with him, I probably wouldn't care if he had to go back on dialysis because when I love someone and I also love their flaws and take on their problems as well. 

To make a long story short, also I feel like I will always meet guys, but they will not take me seriously because of my illness.  It has happened to me for the last 6 relationships in 4 years.   Everything is good and he is really feeling me (likes me a lot) than as soon as I disclose my illness (dialysis) his attitude starts to change and two months later he is gone.  It really hurts a lot but I get over it.  I'm a very attracted woman and will always meet someone.  However, I'm really not sure if I will get marry.  I think about it all the time and use to cry when it happens to others I know but I'm learning just to date and enjoy life and whatever happens just happens.   

 

[cariad]

Question? Would you date a guy with a kidney transplant?

Well, I'm married, but if I had fallen in love with someone with a kidney transplant in my younger years, I can certainly say I would have dated a guy with a transplant or on dialysis or with cancer or similar. My cousin has terminal cancer and his girlfriend is standing by him - in fact, they became engaged after he was diagnosed. I am the type to fall pretty hard in love with someone, so I know that I would not even have considered health a factor. I also never worried about finding someone with a transplant - I thought my appearance would be more of an inhibiting factor than health history since I was brought up to think of myself as gargantuanly fat. It never occurred to me that i would be seen as less desirable because of my health, but then it took decades for it to occur to me that my transplant could (and probably would) fail.

I asked my husband if he would have dated someone on dialysis and he said yes, absolutely. I think he's proved himself to be true to his word.

I just want to give everyone in this discussion a big hug. I hate seeing all of these lovely people who have helped me so much ever doubt their worth as a partner or in any other facet of life. And I definitely hate that anyone here feels alone.... 

[gothiclovemonkey]

I think I would date anyone that was compatiple with me, no matter what they had.
I personally think I am not the lovable type.... but who knows maybe one day?

I think we should try the renal dating site...

I agree about you Richard, you are very positive, and confident, funny, and handsome too! So it probably wont be too hard for u to find love now that u got ur Danny.

Alot of folks here are, I really love you all very much, I know thats a strong word, but its true. I love ya'll, crazy, insiteful, wonderful people, that make my life so much better and I thank you all

[rsudock]

just my    on love, dating, and kidney disease. .
 
When you are touched by chronic illness it changes your perspective on life. Many of us have put on a brave face and fought back and their are many people out their that are looking for people who are willing to face all the odds. It is easy to love someone when things are great, but it is hard to love someone when things get tough. Many people get married and the "for better or worse" actually means "well if worse comes around I'm bailing the hell out." People who are chronic ill genuinely appreciate the good days and are willing to push through the bad days....this is what makes us so lovable. I grow weary of people saying, "Well they are sick and could die, blah, blah, blah, " I continue to believe that NO ONE is promised a tomorrow and if you live long enough you will eventually be "sick" too! So if you are looking for some perfect mate out there who will never be ill, better take a number because we are human. All of us are fighting some sort of battle whether it is mental, physical, or spiritual. 
 
xo,
R

[paris]

This is one of the best threads I have ever read.  I think we can all relate to many of the comments.  I am so proud to be part of this group.  It is amazing how much you can love people you have never met.  All the comments are great.  I cried at lots of them, laughed at a few.   

[noahvale]

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[noahvale]

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[vivalaslele]

Noah- Thank you so much for sharing that, youre amazing. I would like to be more involved in the "kidney world" maybe through some of the organizations you mentioned. Im only 6 months into dialysis so im still a newbie and still in a bit of shock over all of it and just trying to deal and learn the dialysis ropes, but maybe getting more involved would help. Any suggestions on where to go or what to do would be appreciated. You mentioned a couple of times in your post about vanity kicking in. That is one of my major issues right now. I just got a PD cath about two months ago, thats in addition to the hemo cath ive had for about 6 months. ive got tubes hanging out all ove the place!! I am having probs dealing with the way my body looks while im dwelling with all that fluid. I used to be so thin and hot and now I hate my body! Not to mention my confidence is totally shot. I think its just gonna take some time for me to get used to this new me. I am being referred for transplant in March and I know my bod is going to change even more after that so I think I should get prepared...

Richard- Again, thank you for your positivity and words of wisdom on this website. They are so very much appreciated! And maybe I was chatting you up just a little!! 

GLM- I would love to be able to do a kidney patient dating site. I checked out a couple of other sites catering to people with medical probs, but they werent really set up all that well. I know if there are several of us on here dealing with dating issues then there have to be more out there right?? Maybe we could talk someone into adding a dating section right here on IHD. That would be convenient now wouldnt it?!! : )

Love Y'all!!!

[supporter]

You're not really alone.  Even though the people here are strangers (just by way of the fact athat we've never physically met) and are not physically present, there are many of us (maybe even all of us) on here who really do care about you and how you're feeling.  Try to keep it in your mind that at any given time there are so many of us here that wish you well and care about what happens to you.

[Gandalf]

Wow, I have found this discussion so enormously helpful - I guess the holiday period is one where the loneliness and alienation inherent to This Thing really take over - superficially its difficult to enjoy festivity and abundance when the thought of that next dialysis weigh-in session looms! 

But more seriously, reading through the comments, it is obvious that so many of us feel alienated and alone simply because of what the complexity of our lives entails.  I guess that it is impossible for anyone outside to really grasp, and perhaps they would rather not.  It seems that people Out There fear their own physicality/mortality whatever, and are not at all keen to engage with such issues.  My family are far away, in another part of the country, and I too am somewhat alone, although, to be honest, I have created quite a lot of boundaries, because at some point trying to explain a situation to friends who would rather not hear about it in too much detail, but are pretending to want to understand, is tiring (hope this makes sense?!) for all parties.

As to dating other renal failure patients, I have a great fear of the renal thing taking over my identity, so I guess for me personally, I am not sure that it would be a healthy thing, although the thought of being close to someone who knows exactly what the nature of my life and my anxieties is, is incredible.....

In conclusion, dear GLM, my heart goes out to you, and to all of those others who echoed your sentiments; I sometimes visualise this community engaged in a giant collective embrace, as so much of the longings of our hearts seem to be shared.  Please know, my thoughts are with you; I share much of your experience, and perhaps, this too shall pass?

[Lucinda]

It doesn't matter how close you are to your family, they don't get it - nor do they want to.  It is so much easier just to try and go on with life as best you can without including too many in that aspect of your life.  I rarely complain or mention my health at all to anyone but it really does annoy me when I get tired - particularly at the end of the week and I say I can't go out on a Friday night and my family turn around and say something like "You are not the only one who is tired, I am exhausted as well but I am making the effort."  They make absolutely no allowances at all.  As far as they are concerned I am lucky to have time every other day to sit back and relax while I am on my machine.  Unfortunately you have to learn to deal with the loneliness but instead of falling all over them now when they have ailments, I show an equal lack of sympathy and understanding.  As first I found it difficult to be that way but now I find I can do it with ease.  And you know what I love the most...more than anything else is when they use me as an excuse.  "I can't do that because I have to help Cindy with her dialysis."  "I am going to tell so and so that I can't help her today because I am going to be over helping you with your dialysis."  "I can't go to work today because I have to stay home with Cindy because she is sick."  Meanwhile they wouldn't even know the first thing about how to help me with my dialysis and those phone calls are being made while I am running out the door to go to work myself.  It drives me NUTS!!  I never use my dialysis as an excuse for anything but for some reason they think they have the right to do it.  That makes me feel lonely.  I would rather be on my own than having family and friends use me as an excuse.  They are getting recognition from their peers for being devoted caregivers when it couldn't be further from the truth.  The sad truth is that we are all pretty much on our own and unfortunately we have to make the most of it.

[murf]

There is a big difference between sympathy and empathy. Mist people I meet are sympathetic to the point of nausea. I am still alive and kicking and sometimes just want them to understand more. But that it is near on impossible. Unless you are a carer or a patient, there is no way to know all the ramifications of dialysis. This disease is about 99% mental: the boredom. the constant routine, the constant illness ... I have a great group of Friends who try valiantly try to understand but just don't get it. I suppose I don't understand chemo either.

[MooseMom]

I think it is important to remember that just because your friends/family don't "get it" doesn't mean they don't care.  They don't have crystal balls that tell them exactly what it is like to battle a chronic illness.  You can't expect them to understand something they've never experienced.  If you have a friend who is going through chemo and YOU've never been through chemo, you can still be supportive by just listening to their fears and performing small tasks for them like helping with housework or some such thing.  It doesn't take a genius to recognize a friend's suffering.

We experience most aspects of life completely on our own.  We can share experiences and support each other through hard times, but we can't claim to experience those hard times in the same way.  Ultimately, no one else can give us courage or resilience.  Ultimately, we have to find these things within ourselves.  If we encounter people who try to take those attributes away from us and erode our souls, we have to prevent them from worming into our psyche.  We can't permit anyone to undermine us in any way.  It's not easy, but our self-protection is worth fighting for, and if it means casualties, so be it.

[cariad]

It never fails - just when I think I've heard everything, someone on this site recounts an experience that has me muttering 'huh!' to myself for hours at a time. There is a segment on The Colbert Report (fab political comedy program) called "The Craziest F*@#ing Thing I've Ever Seen". Lucinda, your story fits into that category for me. I cannot imagine my illness being used as an excuse for OTHER PEOPLE to book off from their responsibilities. Wow. I'm sorry you have to be surrounded by such nonsense.

I am fine with how my family and friends treat me over this. I don't want it to ever become a central topic, and for the most part it isn't, though people do tend to ask me 'how are you doing?' with a certain tone that seems to wink you know what I'm asking. I could just be imagining it, though, and once I enthusiastically tell them "Great. So great!" we move on to the usual chatter.

I think part of the problem is that everyone wants to be supported in different ways. I do not like sharing this aspect of my life with my parents and feel awkward when they ask, but most people would probably appreciate the interest. I appreciate any concern my husband shows, but some people might feel smothered. (OK, probably not with Gwyn. He's pretty mellow, but I can see how some spouses could way overdo the attention.)

[ChickenLittle56]

I haven't been on IHD for the past 1-1/2 week because I've talking for hours on the phone with a fellow patient at D. Before we started talking for long stretched of time we would make small talk at the D's waiting room while waiting to be called in, usually only 10-15 minutes. One day almost 2 weeks ago she mention that she was on facebook and she told me to visit the page, I went on fb and located her page and left a message with my phone number and the next day she gave me a call. We talked continuously for 3 hours that evening about everything and anything from what is going on our lives to the PCTs at D. Ever since then we are constantly on the talking whether she is doing her house work or when I go outside to deal with my pets(I use bluetooth so I can be free to do what I need to). It makes my work more enjoyable while talking to her. The longest I've been on the phone with her was 10 hours.
I thought ever since I came to this town that I was never going to find anyone to be friends with but now I have a friend that I feel very comfortable iwth. I told her that once it starts to get warmer that we'll have to get out more often to go on walks at the park or along the beautiful creekwalk here in town. She has already ask me to come for dinner one day but i will have to catch up on many projects thats needs my attention since I've put them off for over a week. I am going tell her this weekend for sure.
She came here 2 years ago and she was feeling lonely before talking to me. We both have our health issues, disagreements and personal problems to deal with but overtime I think we can overcome them. Do I think this relationship will survive, I don;t know because it is still way to early to tell but I know one thing and that is I made contact with my first friend here in town. Right now I fell like the luckiest man in town.
 

[RichardMEL]

 

That is awesome for you!!! Now get her to join IHD!!! Really it's lovely to have someone you have a connection with - even if it's born of shared dialysis stuff. At least you both can understand some of the issues you both face. I'm glad you're so comfortable with eachother - that's one of the most important things to me in a friendship or relationship.

I hope it continues for a long time.. whatever happens!! 

[ChickenLittle56]

Thank you Richard for the compliment, coming from a 'ladies man' I appreciate your encouragement.

BTW I did tell her about IHD and she looked around but she spent a lot of time in the recipe section, when I visit her this weekend I hope she is making something out of there  

[okarol]

  That "Chick Magnet" shirt worked for ya LOL!
I am happy you met a friend - good luck!

[ChickenLittle56]

 
I gotta thank Sluff for the present.

Thanks Sluff