Jan , you are not alone honey. Not one bit I for one completely understand what your talking about.

And it is fine to discuss it here. That is what we are here for. Kidney disease doesn't effect just our kidneys. It touches every aspect of our lives. And we need to talk about it and not hold inside of us. Because that doesn't help either.

I know you said that the two of you don't even talk anymore, have you talked to him about this? Ya know the way you said it here?

I don't know about you but for me it is hard to be/feel romantic when I feel like a bloated huge cow.

Please don't be afraid to share how your feeling at all. Just try to reassure him it isn't him at all.

He sounds like a terrific guy Jan. Talk to him and let him know how your feeling.

Jan,

PKD affects all aspects of your life, especially when you're in pain.  Don't touch me, don't hold me, stay away from me are common refrains I suspect many of our loved ones hear from day to day. 

 

My husband knew I had PKD once we started dating and although I have a VERY stubborn and independent streak and insist I can do everything myself, I decided that he had to come with me to the nephrologist before we started to talk about getting married because he had to know what he was getting into.  By the time we got married he knew about the physical manifestations and was careful about ensuring his rambunctious son didn't jump on my back, but over the past few years we've both  been surprised by the pain and exhaustion (for years I either worked through it or it wasn't there...I suspect it was a combination of both).  And although I believe he deserves a much better life than being tethered to someone who spends way too much time in the hospital with appointments, labs, etc., he is very adament he couldn't imagine not being with me, period.  And this is from a man who absolutely hates hospitals!  I'm constantly questioning why he puts up with it and his response each and every time is "I love you and there is no place I would rather be than with you, regardless of where that takes us."  Granted, a great golf course comes in a close second, but given the choice, he's by my side each and every time.

 

Do talk with your boyfriend.  Chances are he misses the physical contact (and I suspect you do too), but would miss YOU even more if you left.  Hugs hurt sometimes.  Holding hands can be awkward and painful.  There are days kisses hurt.  And fear not, you're not the only one who doesn't share a bed with their significant other (when I'm in pain the last thing I want is someone else moving the bed; even an 8 pound cat can shakes the bed too much...besides, my husband twitches all night, which drives me nuts!). 

 

I know it sounds strange, but one of the things my mother developed with my brother, a way of maintaining physical contact when he ruptured the top 1/3 of his kidney and was suffering from kidney colic (excrutiating pain) and couldn't stand to be touched, was to give a gentle squeeze to his large right toe.  He couldn't stand to be touched otherwise, but somehow that gentle touch was a comforting reminder that someone cared.  Perhaps you and your boyfriend can develop your own touch, a reminder that you both care about each other.  Once you've cut off physical contact, it's hard to make that first move back to touching each other.  Hugs and hand holding are very comforting; perhaps you can develop your own hug style that is comforting for you without causing pain.

 

And please, see a doctor and/or pain clinic for more effective pain management.  It's easy for us to say you shouldn't be in so much pain, but we each experience pain in our own way.  Don't be afraid to tell your doctor it hurts like hell and don't accept his assertations of "PKD doesn't hurt" or "it couldn't be that bad" (just think of assertation in the same manner as assume, except he's the only one who's the a%*).  And if he views you as someone who's just trying to get pain meds, find another doctor!  And don't downplay the pain when you see the doctor; just because at that moment in time when they ask if you're in pain and it's only a 4-5 on a scale of 1-10 doesn't mean you have to tell them it's only a 4; tell them it averages what it averages (the real number, not the one you think he wants to hear) and that it's often a 10, if that's the case.  So many time we, especially women, tend to downplay our pain so we don't appear to be whining or wimpy.  If it hurts, tell him it hurts and how much and where it hurts.  The medical goal for treating pain is no more than a 2 on that 1-10 scale; don't settle for a 6 just because that's better than what you were feeling.  It's a gradual process to find the right combination of medication that works for you, but it's well, well worth it. 

 

If your doctor recommends a low level of an antidepressant (e.g., amitryptiline (sp?), don't immediately assume he's dismissing you as a mental case (which we already know you're not).  Some of the older tricyclic antidepressants have a beneficial effect on pain.  No one is sure why, but they do and they're an excellent adjunct to traditional pain management. 

 

Chronic illness takes a toll on everyone and this one seems doubly so as it's invisible like PKD.  We're not in wheelchairs or walkers, we don't have a disfigurement other than extended stomachs (and that comes with negative social connotations).  There are times I've sought counseling, a neutral professional to talk with about how I feel, what I feel, the impact it's having on my life and the perceived impact I feel it's having on my loved ones.  Making that first call was incredibly difficult; I felt like I was a failure, made even more difficult by the fact that I was a serving Air Force officer at the time.  But it's not admitting defeat; it's a very difficult process of acknowledging that right now, I can't deal with this all myself.  It really has helped and there are times I've gone back for a vector check or a quick "tune up"; a reminder that this isn't all in mind, even though intellectually I know it isn't.

 

What I'm suggesting in this novel is to look at all the outlets available to you and find the ones that work best.  Talk with your boyfriend. Tell him you're scared, you're afraid you're holding him back, you miss him.  Seek pain management options and don't settle for the proverbial pat on the head and the reassurance (another a%* word) that all will be well.  And if you feel you want or need to, seek professional counseling as well.

 

Jan, I wish you well.  I wish there were more that I and others could do to provide you support right now.  But although we may not be sitting next to you on the sofa with a warm drink and words of comfort, I know that many of us, if we could, would reach out of the computer and give you a gentle, caring hug.

 

Ruth

Thank You all for sharing with me. It's has help me nowing I'm not the only one who feels this way for one.And I will have a talk with him about what I have discussed here with you. I do see my kidney dr. on the 17th they have moved it up from the 24th. ..And I will talk with him about  how i feel. This is only my second visit with this Dr. I'm so glad I found all of you..and thank you again.. I am on pain pill called methadone.and I take exfflor for the depresstion .But  this last month it's like it isn't working anymore.Or tha pain has gotten worse and I know I'm feeling more depressed. .I also felt like I 'm a failure in alot of ways.And that's not like me..!I will keep in touch .take care .... jan

Hey Jan , I wanted to share with you that I also take Effexor. And I too have experienced many of the same feelings as you are now. It might be a good idea to talk with your doctor about this. It is very important that your dr. know you feel as though it is not working as well as it should.

I often to tend to feel like a failure as a mom,friend,daughter,wife you name it. Like I should be doing more. Like i'm coming up short in everything I try to do. I have learned something so important here from this group. I can't be anything to anyone unless I look inside of me first. We aren't defective or failures at all. We just need some extra tweekin from time to time. Dealing with any illness can cause a great many feelings and being happy isn't always at the top of list.

Or feeling like I want to do something for someone else isn't always at the top of my list. Or even wanting to look in the mirror today. We are here for you always Jan, you truly are not alone at all. And always feel free to come here and talk with us no matter what it is.

We can do this together hon ok.

 

 

Jan,

I can assure you, simply by your intelligent questions and postings, that you are not a failure.  However, your medication (effexor) may be failing you (just because it worked at first doesn't mean it's going to continue to work).  The methadone may also have an impact on how you're feeling (and the weird taste in your mouth...) and impact how the effexor is working.

 

Having a chronic illness sucks, pure and simple.  That's why it's so important that we share our feelings (the outstanding title of your thread) and get treatment when needed.  In addition to the effexor, have you considered one-on-one counseling?  It's always nice to think that popping a pill is going to cure our depression or anxiety, but again, the voice of experience, it's not the "be all, end all" solution, especially for a chronic illness that affects all aspects of your life.  The medication helps you work with the therapist and integrate new coping skills into your life, as well as keep you on track after the therapy ends or tapers off.  But you are not a failure for asking for help.  It's one of the most difficult things you can do and a symbol of strength and commitment and wanting to do more for yourself, which will help you with your other relationships as well. 

 

Hugs,

Ruth

Kim I'm so sorry to hear that you had to go thur this all on your own . By the sound of this so called man that walked out on you..Your better off without him.He is not a man....I can't even think agout how i would feel going thur this on my own.Your a very strong woman..I hope you get feeling better. and take care of yourself., JanGod is with you

Kim,

I can totally sympathize with you.  My husband of more than 20 years walked out on me the month before my diagnosis.  So, he didn't strictly leave because of it, but he really did, because I just wasn't as much fun anymore--tired a lot of the time, in pain a lot of the time, sick a lot of the time--I just didn't know why yet.  So, you and me--we're grieving two losses at the same time--the loss of the relationship and the loss of our health.  I'm so sorry for your pain.  Maybe we can be there for each other to help ourselves get through this.  Feel free to email me at [email protected].

 

Jan,

This disease takes more than just our physical health.  Sometimes it takes our emotional health, as well.  Is there someone (a priest, relative, friend) that you can talk to?  It sounds like you have a really good man.  Sometimes they just don't know what they can do to help, though.  Talk to him and give him a chance to help you.  Helen talked about the stages of this disease, kind of like the stages of grief.  Well, it is grief, isn't it?  Give yourself time to go through the stages, and try not to shut out your man in the meantime.  Sounds like he loves you and understands you as well as he can right now.  Don't be so hard on yourself.  The loving feelings will come back.  Sometimes it helps to act "as if".  Sometimes the feelings follow the actions.  If you act "as if" you are feeling loving, sometimes the actual feeling will follow.  I'm not saying to be phony, but just little steps, small touches. 

God bless you.

Rebecca

 

Lin,

Thank you so much.  I do often lean on you and everybody in this wonderful group, probably more than you know, and I very much appreciate being able to do so.  I try to hold myself very tight, because I feel if I let down, I will break in a million pieces that no one will ever be able to put back together.  So, that's probably why I've gone downhill so fast.  Stress really does make the cysts grow faster, and I'm one who can prove it!  I just don't know how to let it go right now.  But I'm trying...That's all we can do, right?

Rebecca