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Author Topic: Intimacy issues...please help me!  (Read 15972 times)
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #25 on: December 02, 2011, 12:39:33 PM »

I have wrote about this in other posts but when I was on dialysis sex became very painful for me. My boyfriend was understanding but he did/does masterbate. Dialysis is hard on a relationship...I always told Aaron, "You need to really be honest in how much you can take being with a chronically ill person. Are you okay with maybe never having children, having a mediocre/nonexistent sex life? These are tough questions you have to ask yourself and allow yourself to answer honestly without feeling like you are being a jerk if you think "No I can't live like this....""  Everyone has a threshold of what they will and will not deal with....what are the things that are most important in a relationship to you??

Another thing you may ask her to consider is getting a hormone study done. Maybe her estrogen, progesterone, etc..is low and if she wants to get hormone replacement therapy it may help...if I would've been on dialysis longer I was going to look into it....a partner can only take so much I think....

good luck...are you her matching blood type....transplant can help these sexstacles.... :) 

xo,
R
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
amanda100wilson
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« Reply #26 on: December 02, 2011, 10:47:33 PM »

Willis, how long have you been on dialysis?  I suspect not very long.  Your physical health does change the longer that you are on dialysis.  I have a 22 year history of renal failure and  have just switched from  8 years of PD to home HD.    Years ago when I was first on PD, I felt pretty well, but during the eight years that I've been doing it this time there has been a real decline in my health.  I would say that being ill for a long time does qualify as being too sick.  I actually found your attitude quite insulting.  I have been married for 26 years, so when I became ill I was already married.  I guess that because I am unable to fulfill my husband's needs, I should have walked away from my marriage, based on your views?  . My home is rarely tidy because I simply don't havethe energy so it certainly isn'tpriorising things like that over sex.   Due to the insidious nature of CKD  I've beaten myself up enough trying to convince myself that I don't do things because I am just feeling lazy.  In the last five weeks since I've been doing home HD, I realise how ill I  actually did feel, since all of a sudden, I can actually do things again that I wasn't physically well enough to do before.  Please don 't judge others by your own situation. 
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
MooseMom
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« Reply #27 on: December 02, 2011, 10:57:04 PM »

amanda100wilson, good for you for finding a modality that is more conducive to good health. :clap;  "Insidious" is a very good word to describe renal disease.  I think we all get used to feeling so awful that we lose sight of what is normal.  And oh my God...the fatigue of CKD is indescribable.  "Fatigue" just doesn't do it justice.   :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
fearless
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« Reply #28 on: December 03, 2011, 10:08:48 AM »

amanda100wilson,
your history sounds extremely similar to mine.  8 years on PD - declining health - lots of self-blame for "laziness"  Just switched to hemo, and working to switch to home hemo.  Thanks for posting, because sometimes I question whether I stayed on PD too long.  I think my doctor might never have said "well, it's time to go to hemo"  I found out for myself that i should be doing better.  He always supported whatever i wanted to do, but was not very pro-active himself.  Oh well.  I think if you are doing better, than I can too!  That's why I'm glad you posted.... :)

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fearless
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« Reply #29 on: December 03, 2011, 10:20:01 AM »

whatever happened to "in sickness and in health"
marriage is a commitment to a person, a soul...it's a partnership.  Sex is an animal drive, like eating.  But various individuals, for various reasons, cannot partake of everything all the time.  And may not be able to partake in one thing ever!

If your animal drives are the higher priority in your life, be honest with yourself about that, and expect that you will probably not be a good candidate for marriage.  And when you're old, or sick yourself, you might be alone.

But if your higher priority is spiritual companionship, and sharing your life good and bad, then your finest dream is to be with someone who feels the same way.
i hope for each one that they have what they want.

contemplating, I think you are a soulful person, and i suspect you desire sex with your gf because you want her to desire and enjoy it too.  When you're really focused on the other person, your greater joy is from his or her pleasure.  It really really sucks when the person you love can't enjoy sex.  I believe you can find a way to feel some gratification for yourself, but until she can share your pleasure, it will be a challenge to your relationship.  But relationships have challenges, there's no way around it.  It seems you've already decided you're up to the challenge, you just are looking for how to meet it.  All of the suggestions here will help you I think.  And love will find the way.
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #30 on: December 09, 2011, 06:33:43 PM »

I really do agree with taking the side of the renal patient and it is true we are very fatigued, drained, and miserable after treatment....but these  the comments confuse me because sometimes we take the side of the renal patient and other times we say, "Heck yeah leave the sick person if they aren't fulfilling your needs." 

sorry IHD family I just keep thinking about the post from the lady who was bashing her sick husband saying "he wouldn't do this or that , or help himself" etc... and basically everyone took her side saying "you should leave, don't drown with him." It just rubs me the wrong way because at the end of the day this is a debilitatiing disease with no cure....sorry I should just stay away from posts like this.....
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
RichardMEL
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« Reply #31 on: December 12, 2011, 06:59:55 PM »

Rachael you raise a valid point. It is true that we do tend to "take the side" of the person posting - I guess because we simply have no other view of the situation, and someone posting here in obvious frustration at what they see from their loved one, is obviously going to influence those of us that are all about doing the best you can for yourself (as a patient) - or if you like, being "compliant"(but I hate that word because it has somewhat negative connotations to my way of thinking).

I know when I have read/been involved with(at least as a poster here) some of the situations you alude to, I try to balance the needs of both parties involved. Caring for someone who seemingly won't care for themselves can be very difficult on a number of levels - specially if you try to help as best you can and get nowhere, it can then be counterproductive emotionally.

However I agree that it's a very biased issue, and we do not hear from the other side, so is unfair in a way. I guess as a community member of IHD we do try and support everyone here. I don't know about telling people to leave relationships or situations - I think the most I usually suggest is to ensure a person takes time for themselves - as in look after their emotional needs kind of thing.

I suppose my own perspective as a renal patient has always been to do the best I can for myself - both while on D and now with the gift of a transplant, so it's difficult for me to understand the kind of mindset that someone may be in to almost deliberately go against medical recommendations as to what would be the best for them. I understand that things like depression and a wish to have some form of control over one's situation, or something like that could lead to someone ignoring things like diet/fluid control etc. I know how diffuclt it can be for some to adjust to the kidney failure "routine" and I take from your post a thought to be more considerate of such issues - even though I don't personally understand it I surely don't deny these things exist.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #32 on: December 17, 2011, 12:29:31 PM »

Rachael you raise a valid point. It is true that we do tend to "take the side" of the person posting - I guess because we simply have no other view of the situation, and someone posting here in obvious frustration at what they see from their loved one, is obviously going to influence those of us that are all about doing the best you can for yourself (as a patient) - or if you like, being "compliant"(but I hate that word because it has somewhat negative connotations to my way of thinking).

I know when I have read/been involved with(at least as a poster here) some of the situations you alude to, I try to balance the needs of both parties involved. Caring for someone who seemingly won't care for themselves can be very difficult on a number of levels - specially if you try to help as best you can and get nowhere, it can then be counterproductive emotionally.

However I agree that it's a very biased issue, and we do not hear from the other side, so is unfair in a way. I guess as a community member of IHD we do try and support everyone here. I don't know about telling people to leave relationships or situations - I think the most I usually suggest is to ensure a person takes time for themselves - as in look after their emotional needs kind of thing.

I suppose my own perspective as a renal patient has always been to do the best I can for myself - both while on D and now with the gift of a transplant, so it's difficult for me to understand the kind of mindset that someone may be in to almost deliberately go against medical recommendations as to what would be the best for them. I understand that things like depression and a wish to have some form of control over one's situation, or something like that could lead to someone ignoring things like diet/fluid control etc. I know how difficult it can be for some to adjust to the kidney failure "routine" and I take from your post a thought to be more considerate of such issues - even though I don't personally understand it I surely don't deny these things exist.

Hi Richard thanks for understanding...like you, I have always tried to push on trying to live a full, happy, and independent life with this disease. I do feel very sad for other members out there who live with someone with ESRD, and feel like they are doing all the work. I can empathize greatly with our caregiving members who probably feel like they are drowning, when their partner doesn't seem to have the care or will to live. Then I think about how I felt for the first time on D, and I was pretty sad, angry, and bitter too, which makes me empathize with the member/person who is struggling with ESRD too...it is such a fragile line to walk being in that situation. I don't really ever know what to say to members or people I meet in person, when both parties struggle with this disease and how it affects their relationship...

Getting a little nostalgic here...

When I was a little girl I use to cry all the time about not being "normal". I was the only brown girl at my school (besides my siblings) and I was "sick". I grew up feeling like I had to prove myself all the time. (Just because my kidneys don't work, doesn't mean I am not as smart, pretty, or hardworking as you!) It was so frustrating feeling like I was less then everyone in highschool, because of a disease I couldn't control. I still remember my first boyfriend telling me, "I just can't be with you because you will cost me to much money, cause you're sick!" I think this is why I pushed myself so hard to work and go to school...I was just so scared of being different then other people...I wanted to be like everyone else....

sorry I guess I am rambling, but I think what I am trying to say is that I (and my family) have had a lifetime of carrying this burden. Always knowing I was different and life was going to be challenging; I have had more time to accept this disease and its impact on my life and who I am. Some of our members have lived a lifetime being healthy and disease free and BAM they are on dialysis....that has to be a hard pill to swallow...

I hope everyone who ends up with ESRD finds a way to cope with it the best they can; whether you are the person who suffers directly or you are a love one that has to watch the person suffer...

xo,
Rachel
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
cariad
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What's past is prologue

« Reply #33 on: December 18, 2011, 03:26:28 PM »

I really do agree with taking the side of the renal patient and it is true we are very fatigued, drained, and miserable after treatment....but these  the comments confuse me because sometimes we take the side of the renal patient and other times we say, "Heck yeah leave the sick person if they aren't fulfilling your needs." 

sorry IHD family I just keep thinking about the post from the lady who was bashing her sick husband saying "he wouldn't do this or that , or help himself" etc... and basically everyone took her side saying "you should leave, don't drown with him." It just rubs me the wrong way because at the end of the day this is a debilitatiing disease with no cure....sorry I should just stay away from posts like this.....

Rachel, I had problems with that post, too. On the one hand, as Richard said, you only know one side and if someone will do NOTHING for themselves, then that is essentially holding a caregiver hostage and saying 'I will die if you don't do everything for me'. However, I felt there was much more to the story than we were hearing, but obviously have no evidence. To be honest, if someone does not want to stay in a relationship for whatever reason, fair or not, it does not do any service to the people involved to scold the person who wants out and try to get them to stay in the relationship. You cannot make anyone, including yourself, love someone. The weight issue really ticked me off as that was so judgmental of renal patients, and coming from someone who has never experienced ESRD before, I certainly felt it required a response from someone who had, and who has also researched the obesity myth to death. The rest of it, I felt she had already made her decision and really just wanted to hear that she had a right to put herself first. I think in the end, if that's what one person wants, it is best for everyone to just rip the bandage off all at once and move on.

I was really depressed through some of the ESRD nonsense and I was lucky that my husband was pretty great about it. Not always, and definitely he did not really understand my emotions and decisions in the pre-transplant phase, but he never talked about leaving.

Though we may not be able to take every renal patient's side, rest assured that we will always be on YOUR side, hun. :)
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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« Reply #34 on: January 01, 2012, 04:22:36 PM »

I find myself in the same situation and finding it harder to cope. Perhaps because my husband won't talk about it. He has been on PD for almost 3 years and our sex life is non-existent. We hold hands and he gives me peck like kisses but there is no passion or emotional support for me. He wants to be cuddled and coddled but just complains when I try to snuggle up. He says there is too much pressure on his stomach. I feel like I'm wasting away and that this man on dialysis is not the same man I married. I'm so sad and I don't want to sound selfish. I should be thankful as he is still able to work. His mother had no issues when she was on dialysis so I thought I knew what I was in for but he won't take care of himself and now can't even walk 3 blocks with me. I'm seeing a counselor and have told my hubby I think he's depressed. He says he thinks so too, but won't talk to me or anyone. I feel like a terrible person but I don't know if I can endure a lifetime of this. I admire you all here so much who are able to take care of yourselves while living with someone on dialysis and all the ailments that come with it.
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RichardMEL
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« Reply #35 on: January 02, 2012, 07:26:06 PM »

Hi What about me... that sounds difficult in the extreme. I am sure other folks on or who have done PD can give more practical advice, but it seems he's complaining because of the physical symptom, which kind of makes sense. What about you spooning him from behind?  Or even if he spoons you in a way that can relieve the pressure on his tummy? I realise that is but one aspect of a bigger issue, but I think there must be ways to be intimite/snuggly that work for you both.

he may also feel self conscious about his body with the bloated stomach etc and not feel "sexy" or even because of his stomach thoughts of being intimite is a turn off because the positions etc you may have tried (not just talking intercourse, but cuddling etc) have been uncomfortable - not to mention with a cath hanging around and all that.

Of course there are other ways the two of you can express physical intimacy that do not involve contact with the stomach area (I don't need to fill in those dots...) it may just be that you both need to find things that can work for you back, or even new things, to help fire things up between you again.

My best wishes...
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #36 on: January 02, 2012, 07:51:10 PM »

I'm on CAPD and my sex drive has gone down a lot as well, part of it being because I have gained some weight from the dextrose solutions, and the fluid retention.  It doesn't help that I have about a 2 1/2 ft. catheter hanging out of my stomach either.  A lot of the time I just feel like I'm ugly and gross and why would anyone want me?  My bf doesn't care about it though, he's been a great support.  And honestly :shy;, when I'm not in the mood if my bf starts something he usually gets me in the mood anyway :)  and that happens to women even not on D.  We normally think we're not...then all of a sudden we are  :thumbup;
Is M modest?  If she's up to it watch a porn together, something you may both enjoy... lots of times my bf and I will watch the ones with the horrible story lines, which gives us both a laugh and some arrousal!! :yahoo;
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
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« Reply #37 on: January 07, 2012, 06:50:54 AM »

@contemplating thought - Human sexuality is a passion of mine. An oft overlooked solution has also not been mentioned here, and that's to 'open' your relationship. It's clearly dependent on the views that each of you hold on monogamy, relationships, boundaries, etc. But the simple truth is, there are many, many couples out there who are married, and do not have sex with one another. They married because they are soul mates who are simply sexually incompatible, or because their goals in life were one and the same, but their goals in the bedroom were not. Their GOALS are to love, honor and respect one another until the day that one of them dies, and they find creative, or socially unusual ways of ensuring that it happens.

Successful relationships are ALL about communication, and in trying to fulfill one anothers needs in life. As much as we might like to say that sex is an afterthought, it isn't, and it's unrealistic to ignore that fact. For me, it's always seemed highly unfair to say 'You may spend your life ONLY with me, but this basic need of yours? I don't want/can't fill it, so you do without.'

If you suddenly couldn't do laundry, you'd find someone who could, wouldn't you? Because laundry is a basic part of lifes needs. It sounds really simplistic, and I know it isn't for many, but it really CAN be that simple.

My husband is the one who suffers ESRD, but I have -always- had a lower sex drive than him. ALWAYS. I accept it as part of our personalities. Prior to his libido taking a nosedive, we had many conversations over the course of ten years together about him satisfying his desires outside of our marriage. HE chooses not to, because he holds his own views on relationships. :) And that's okay. But please, I urge you, don't feel shame, or selfish because you have needs that aren't being met. You are HUMAN. Accept that, accept that the two of you have an issue to address and figure out so that BOTH parties are happy, and you'll be much more successful than tamping down your own needs and feelings. The resentment that rises from that can be a real killer.

However, if that route isn't something you want to contemplate, I'm gonna second the toys and porn sentiments. :)

@What About Me - I understand how you feel. I'm a caregiver, and it CAN feel like we get lost in the shuffle of ESRD. Then, it can feel horribly selfish to feel that way. It's a pretty wicked circle. ESRD affects the spouses/families as well. The caregivers even more so. There becomes so  much focus on the ill person, it's easy for a caregiver to feel as if they are simply there to do the work, and appreciation goes a LONG way. Please, keep seeing a therapist, and please, always, ALWAYS remember, you are a human being affected by ESRD as well, and it's really important that you always, always remember your own health, mental, emotional, and physical.

Jen
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TIA reveals failed kidneys (completely unexpected) January 2011
Husband on home PD since May, 2011
Switching to NxStage Home Hemo Nocturnal early spring of 2011

http://failedbeans.blogspot.com/
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« Reply #38 on: January 11, 2012, 03:02:36 PM »

@contemplatingthought
I lead a group and a few other events in my area about this very topic.

So, let me start by saying, (Sorry for the NSFW/TMI) But, I'm a young woman with a transplant. I'm 22. I lost my "v-card" when I was still back on dialysis. I will say as much. My sex drive did not go down or anything. But, that's me. What did happen though:

I was tired. I was exhausted a lot of the times. I was stressed. I was also self conscience. Illness, changes your body.

Now.

I still at times feel tired,exhausted and stressed. My illness, at times even with transplant takes a toll on me. More so emotionally. I know my partner loves me. I know he thinks I'm attractive and everything. But, there's days, I don't feel it. This is basically true for anyone. Illness or not.

This is the thing,

It's really awesome that you are asking this stuff. It really is. I am CONSTANTLY surprised when people ask me at my group/programs whether I am sexually active or not. Because sadly, we have extremely wrong ideas, at least in mainstream society, that as someone with an illness, we're not sexual beings.

As well as, we're taught that sex is dirty. Needing sex is wrong. (More so for women than men. Men needing sex, is understandable. If a woman needs it, we label her as a nymphomaniac.  By the way, toys such as Vibrators were in fact created to "cure" such illnesses as "female histeria")
 
Women with illnesses: So, not only do we fall into a trap of "As women we don't need sex, or shouldn't need it" I find that we sadly fall prey to the "Well, your sick. So, you don't have any needs!"

We Are HUMAN. Humans, have needs. Sexual needs fall into this category.

Hell, Let's not even bring up the term "sexual". Intimacy. As others pointed out, small things, holding hands, massaging.. all these things are intimate.
They fulfill many things we need in a physical human contact area.

And, I will say. My boyfriend has Asperger's. There's times he's overwhelmed, over stimulated, and he cannot do intimate acts, that perhaps I would like. But, we both enjoy say: Sitting together, and doing our own thing on our laptops. Or, watching a movie together. Maybe snuggling.

It gives us closeness we need, without the sex.

Also, I am constantly astonished by the view on the topic of masturbation. Masturbation is just as simple and need as say eating, drinking..going to the bathroom.

The fact that in this day and age, people still find it a taboo topic, or "wrong" scares me. Honestly does. I have to wonder, "how on earth are we supposed to love ourselves, see ourselves as sexual beings. If we don't even enjoy the act with ourselves?!" As Woody Allen once said "don't knock masturbation, it's sex with someone I love!"

It is NORMAL and HEALTHY need we all have. Now, how we choose to do it, in forms of pornography and what not, that's a can of worms I will not open. I feel, as long as people understand the fact porn is not real. It's entertainment. Just like you don't expect to turn into a master Jedi and fight the Sith like a boss, you understand porn is on the same level of unrealistic. But, that's another topic, for another day.

Now, on the topic of "Open relationships and monogamy". I'm personally "Polyamorous". I am non-monogamous. And, as self determined, I would have been this, if I was perfectly healthy. That's just how I identify relationship orientation wise. It's not purely at times based on sexual needs.

And, sadly, the literature and examples of "open relationships" is scarce. But, I will say from a personal experience:
(Although, if you do have some interest, or just wish to understand the topic itself, I highly suggest the book "Opening Up" by Tristan Taormino.)

I have my boyfriend. He is my "Primary". If something makes me uncomfortable, we talk it through. Like, I don't see me stepping out with my say, for lack of a better term "friend" because one partner cannot give me something. I'm sorry, we're all humans. We cannot expect ONE person to fulfill all our needs. But, we can accept them and love them no less because of it.

Because let me explain a monogamous relationship problem I had: Due to certain medical reasoning, I cannot do something. I just can't. Not physically possible. I know this. I know this quite well. What I also know? My partner needs that. It's a human need that he has. At the time, my ex was all "happy and dandy" with this idea, but it never settled for me. Sure, we could do other things, but it was missing. Slowly it ate away at us. He wouldn't tell me "what it was", but I'm not stupid. I knew something was missing. And, was more upset that he could not tell me this. I'm a big girl. I  KNOW it.

The fact he tried to ignore and "hide" the fact for me was far more upsetting that the actual issue.

(This, repeated itself in other relationships) And even the one I am in. Difference is,
My partner and I BOTH have things we just cannot do with each other. Things we BOTH need. We both discuss it, we both understand it, and both have a understanding of "Hey, I am getting this from another person, I care deeply about." But none  of this means we love each other any less. It does not weigh on me as much, that I cannot give this thing to my lover/partner. And, that my partner IS getting something he needs, and he is happy. That, I am getting what I need, and he is happy for me.
 

(As long winded as this is)

Back to your original thoughts.

First, you've heard what we here have to say, and that's good information. But, you need to not lay it off. It's important to be perfectly honest with each other. Talk about it openly. Yes, perhaps maybe some things might hurt if said, they may trigger things. But, the impact of not discussing it is greater. And believe, she probably is aware of the issue. Libido may go down, but there is a understanding that something is "lacking" in a relationship. Discussing it, will surprise you.

As stated, COMMUNICATION is so vital. In a platonic setting:

My friend is upset at me. And does not discuss it with me straight out. I know something is off. But I don't know what. If she just told me "Hey, this hurt me when you said ____________ This is why_____________" And we can discuss it and resolve. Otherwise, I know she's upset. But she won't tell me. And just continue to get more upset, because if I'm not aware of the situation, it's going to repeat itself.

I have taken this communication (And, at times as with life, a skill I always need to improve at) with me at other situations of life, and it helped greatly. And, if someone's feelings are hurt, and therefore they're not willing to listen, or avoiding topic because it might upset, it shows me something vital is lacking, if not dealt with, things cannot continue.

Anyways, I'm sorry this post is so long. But, I hope you and your girlfriend the best. It's hard, and i commend you greatly. It's not easy to reach out and seek to understand what we go through, It surely hasn't been for my boyfriend. He doesn't know at times what to say when I'm just crying because I'm so tired of needle sticks, but, he sticks through it.

As a last small thing, something that I found personally reallyy really helps me in a silly intimate couple way: When my boyfriend sends me a little text during appointments. It reminds me he's thinking of me. And it's usually "How are you beautiful, I hope clinic is going well. Pad thai at your pad thai.. ;) tonight." It reminds me he loves me. That he is not just thinking of my health, but also, reminding me I'm still human, not just a pin cushion.

Okay. Sorry this is so long. >__<




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MooseMom
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« Reply #39 on: January 11, 2012, 04:16:28 PM »

Ladystardust, may I ask you something?

My son is 20, and he has Asperger's/high functioning autism.  Now, believe me, I understand that one person on the autistic spectrum is very different from another person on the AS, but with that in mind, may I ask you about your boyfriend?  My son is having difficulties with girls.  He knows he is autistic, and he gets confused by the usual social signals that the rest of us can easily interpret.  But he won't tell people from the beginning that he has Asperger's.  Instead, he becomes convinced that somehow he will screw up a friendship/relationship and the other person won't be honest with him and tell him what he has done wrong.  It is an odd mix of self-sabotage and self-fulfilling prophecy.  I have told him that if he wants honesty from another person, then he is going to have to be honest about his Asperger's and give people the chance to deal with it instead of him pretending to be something he's not.  He tries to act all big and tough and manly to hide what he perceives to be a weakness.  I have to admit that it reminds me of how some people try to hide their physical illness and then wonder why relationships go so awry.

Anyway, I guess my question is, does your boyfriend let people know he has Asperger's?  My son has difficulty in thinking about other people.  He knows he needs to be more mindful of showing his interest and affection for others, but this is not innate knowledge; I have to remind him.  Does your boyfriend have this kind of difficulty?  Do you have any suggestions for how I might guide my son through this?  Thanks so much!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #40 on: January 11, 2012, 11:39:02 PM »

@MooseMom thank you for asking that.

I will answer you personally about what you asked.

But I will say, being with a boyfriend who has a "illness" as well. Has taught me a lot. Yes, we our illness is physical and at times visible. But, for him. His disability is social. The way his brain processes things is different. At times, he also gets really overwhelmed with not being "normal". Not understanding things that seem to come to the rest of us (even renal patients) so easily.

We're different, but in less ways than we think. His illness made me have to rethink how I communicate with people. And do it better. I have to think in more abstract terms to at times see where he is coming from.

And, when he has a very "typical" aspie moment, I have to have patience and figure out how to help. It sure as hell made me far more patient than I was before. :P

Also means I can't do that whole "Build a bear has really cute penguins, you like penguins right?." if I want to actually do it, I have to be blunt and say "We should go to build-a-bear. Because they have penguins. And I want to make you one. And you make me a kitty. It will be awesome"

(He's actually excited about this, due to the fact the penguin he has, has helped me sleep better, so he wants me to have a penguin he made for me, to help me fight bad dreams. :):bandance;
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« Reply #41 on: January 13, 2012, 12:50:50 AM »

I was going to ask the single gal on the 3rd shift if she'd be interested in going out sometime. Our eyes meet when she's getting off, and I'm just starting.

I may have to revise my thoughts.
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Ladystardust24
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« Reply #42 on: January 13, 2012, 07:15:40 AM »

@KraigG

I had something going with one of my closest friends that I had dialysis with.. We're still really good friends.
 
I think you should ask her out. Believe me, even though I had actually had a 2 people I was on dialysis ask me out (Given, more if I include the creepy old men from when I went to dialysis elsewhere during vacation. Why does a 60 something year old dude ask a 17 if she's single and he'd like to take her out... O_o ??)

I digress, go for it. Because despite Thad and I not being compatible as romantic interests, he'll still come over and cuddle me and let me know he's there for me. Because, in some way, he is a guy (who still thinks I'm cute, and that's flattering) And he is a good friend who understands EXACTLY what it's like. And it's really nice to have that)

(Pst, don't let the dialysis nurse catch you making out. They don't like that. :P ) hehe
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #43 on: January 13, 2012, 10:20:51 AM »

I really do agree with taking the side of the renal patient and it is true we are very fatigued, drained, and miserable after treatment....but these  the comments confuse me because sometimes we take the side of the renal patient and other times we say, "Heck yeah leave the sick person if they aren't fulfilling your needs." 

sorry IHD family I just keep thinking about the post from the lady who was bashing her sick husband saying "he wouldn't do this or that , or help himself" etc... and basically everyone took her side saying "you should leave, don't drown with him." It just rubs me the wrong way because at the end of the day this is a debilitatiing disease with no cure....sorry I should just stay away from posts like this.....

Rachel, I had problems with that post, too. On the one hand, as Richard said, you only know one side and if someone will do NOTHING for themselves, then that is essentially holding a caregiver hostage and saying 'I will die if you don't do everything for me'. However, I felt there was much more to the story than we were hearing, but obviously have no evidence. To be honest, if someone does not want to stay in a relationship for whatever reason, fair or not, it does not do any service to the people involved to scold the person who wants out and try to get them to stay in the relationship. You cannot make anyone, including yourself, love someone. The weight issue really ticked me off as that was so judgmental of renal patients, and coming from someone who has never experienced ESRD before, I certainly felt it required a response from someone who had, and who has also researched the obesity myth to death. The rest of it, I felt she had already made her decision and really just wanted to hear that she had a right to put herself first. I think in the end, if that's what one person wants, it is best for everyone to just rip the bandage off all at once and move on.

I was really depressed through some of the ESRD nonsense and I was lucky that my husband was pretty great about it. Not always, and definitely he did not really understand my emotions and decisions in the pre-transplant phase, but he never talked about leaving.

Though we may not be able to take every renal patient's side, rest assured that we will always be on YOUR side, hun. :)


Thank you Cariad for being such a wonderful friend.

In the end I guess it is my own fear envisioning Aaron sitting at his computer typing away about leaving me when I am sick....I hope I never let go of my work ethic or "can do" attitude but I know things do tend to slip away on dialysis, even when we don't want them to....I never want Aaron to feel that way about me..... :pray;

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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« Reply #44 on: January 15, 2012, 12:00:59 AM »

Good luck with asking the single girl out!!! At least she'd know you understand some of what she's dealing with. I don't know that it can hurt too much unless she or you) become uncomfortable, but heck just asking someone out is not a crime and if she says no thanks - well nothing ventured nothing gained.. but she might say yes or you may wind up with a good friend so.. sure.. go ahead :)

As for the 60 y.o's asking teenage girls out. yeah that is creepy but I suppose that's proff, as gross as it sounds, that libido doesn't have to die out with D.

I try to only ask out girls (women!) who are legal and hopefully in my same generation... uh oh soon that will be the 60 y.o. crowd!! *shudder* lol

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
gothiclovemonkey
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« Reply #45 on: January 15, 2012, 06:10:41 AM »

seems like everyone has pretty much said what im going to say, but im going to anyway :P
im 28, female, and im on D, have been since 07, and for the longest time i wanted absolutely nothing to do with sex. (but not all of that was due to dialysis!!)
I just recently started dating someone, it has gotten serious, and we have talked about it. I told him that I dont really get frisky very often, so it might not happen as often as hed like. (turns out hes the same way, and likes to have... "him time" if u catch my drift) I think it should be perfectly acceptable to watch some porn and take matters into ur own hands when the need arises....

also like someothers have said, there are LOTS of things she could probably do, that arent tooo much for her, as a special "treat" when shes not in the mood...
 
idk if anyone said this, because i stopped reading about halfway down, but.

From personal experience, i find i get "in the mood" alot easily-er? if i am "wooed" lol u know, hold her hand, caress her face, stuff like that... show her the non-sexual side of making love... and not just when u want to get it on! hold her when she feels sick... u get the idea... if shes anything like me, it might put her in more of a spot to want to Help u out (trying not to be too graphic but i think u can understand?)

also... there are um toys for dudes u might look into lol
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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Brightsky69
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« Reply #46 on: January 15, 2012, 09:55:25 AM »

I am on my 2nd transplant and it's over a year old and I still have no desire for sex....I use to when I was younger but not so much now. I really don't think it has to do with my health. It may have a lot to do with the partner (in my case).
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
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