I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: dawn24 on August 04, 2011, 05:26:08 AM

Title: Newbie who needs help
Post by: dawn24 on August 04, 2011, 05:26:08 AM
Hello everyone.  I have been a lurker on this site for about 6 months because my long distance BF is a diabetic who has been in fast decline since this time last year.  I've been making plans to move back so we can be together full time but in the past couple of months he lost his mother (to a chronic illness, COPD) AND found out he's now stage five.  In a couple of weeks he'll be having surgery to insert the catheter for PD.  The problem is he has shut me out of his life and said he just wants to be alone. He hasn't been responding to my texts, emails, or phone calls.  I know he is grieving and severely depressed.  I made a suprise trip to his city in an effort to get him to open up to me and but I couldn't pull him out of his dark place.  He has a loving family but he is so introverted and I'm the only person he has ever expressed his hopes, fears, and sorrows to  :(  Both his family and I were hoping my showing up would help him.  And it did, but only a little.  I was able to get him to smile and laugh a few times, but not much. He even made a couple of jokes.  But mostly our time together was very quiet and sad.  He's a totally different person than a year ago.  He said and did things that really pointed to his deep depression----that he can never have sex again, that he hates what he sees in the mirror everyday.  We even gave him a buzz cut while I was there, and he's always been such a diva about his hair.  When I left he wouldn't say he loved me, wouldn't say goodbye, only "See ya"

I NEED advice on what to do from those of you who are going through this.  I love this man with all my heart and we were building a life together until this happened.  I understand what grief is like, I've lost both my parents and I'm only 38.  So I know what a dark place he is in, and how grief compels you to do some strange things.  Add to that the kidney failure . . . .he said the two reasons for ending our relationship is he just wants to be alone and the fact that I've already experienced so much loss in my life.  There are two reasons I made the surprise visit:  one he wouldn't respond to my questions about if this is REALLY what he wanted, for us to be over.  And two, he finally sent me an email saying that he needs to be alone, he can't let me go down that path, and "he's made up his mind and thinks he going to refuse treatment"  To me that was a call for help, but my visit didn't do any good  :(

I'm still planning my move down there and his family is going to help me get settled.  I am NOT ready to give up on this man but have no idea how to proceed from here.  I know once the dialysis starts he's going to start feeling better physically and mentally.  In the past he's actually asked me to go to his Dr appts with him when he hit stage four because he knew I'd be able to ask the right questions, etc.  He's had no problem accepting help from me until now.  From the beginning I've totally understood his condition and the toll it takes on him, I don't have any blinders on.  Can those of you who are in the midst of it please tell me how I should proceed?  He's not respondind to any of my messages.  Should I just keep sending them?  Leave him alone until he's been on the dialysis for a while?  Anything else?  I'm at a total loss and very, very worried about him

Any advice would be so greatly appreciated
Title: Re: Newbie who needs help
Post by: Pam on August 04, 2011, 05:52:09 AM
Lots of  :grouphug; to you Dawn...I really don't know what to say. Once he starts dialysis he will feel better. Is he getting any meds for depression? I think the best thing you can do is just make sure he knows you are there and give him all of the support he needs. I am on dialysis and am a diabetic, I have days when I wish everyone would just let me fade away but those feelings don't last long. He needs time to heal and adjust to the changes dialysis will bring.
This site is full of wonderful people who will be able to give you better advice than I can.
Pam
Title: Re: Newbie who needs help
Post by: billybags on August 04, 2011, 06:05:22 AM
First of all  :welcomesign; to the site. Wow, there is a lot going on with your boyfriend, having diabetes is bad enough but to have the kidney failure as well is not good. He sounds like he is very depressed, which is understandable. He also sounds like he is pushing you away because he loves you and  he doesn't want you to be chained to some one with all these illnesses.He is looking a head and he doesn't like what he sees. He really needs to speak to a councilor, a doctor perhaps, some one who will listen objectively. But he needs to know that it isn't the end of the world to have diabetes and renal failure, lots of people have a good life and can carry on living it. There is so much going on with kidney failure now, transplants for instance, PD is easy to cope with, it doesn't  stop you from getting out and about or even working. You sound like you love him alot.  Advise , I don't know, do you leave him to come to terms with this in his own time or do you keep at him and let him push you further away. I don't know. Please keep coming back and let us know how you go on. Sorry I am not much help.
Title: Re: Newbie who needs help
Post by: dawn24 on August 04, 2011, 06:12:23 AM
He used to say he had ten years left, and when I mentioned that number to him he snorted and said "you're giving me that long?"  No way he'd get counseling, he doesn't even think he's depressed.  I can say that he can never push me so far away that I won't come back when he's ready.  Never. 

Title: Re: Newbie who needs help
Post by: jagermiester on August 04, 2011, 06:15:26 AM
Dawn,
I'm sorry to hear he is in such a place. I understand the place he is in which is you don't want to die, but you don't know how to live, the pain is too much.  It makes you frustrated and angry though at times when it seems he is making the choice for you about your relationship, like you don't have a say in it.  This is just from my experience and I know everyone deals with things differently, but just keep talking to him.  Keep e-mailing, texting and going to see him.  Just let him know you are there for when he is ready to talk.  Keep the door open and he will walk through when he is ready.  Don't try to push him to talk, that will only make him withdraw some more.  Just "be there".  Even if it is just sitting by him on the sofa for hours in silence without talking.  It's knowing that someone is there which will keep him going and he will talk.....  when he is ready. 
Title: Re: Newbie who needs help
Post by: dawn24 on August 04, 2011, 06:29:09 AM
Thank you, that really helps.  I do know what you mean about just being quiet.  I did that when I was there and it seemed like the right strategy.  It's so difficult knowing what to do being so far away though.  I didn't know whether to keep sending him messages or to back off.  My last message to him was Monday after I got back from my trip down there. I said that I'd never give up on him and that I'd always believe in him.   I think he could possibly be having self esteem issues too. 

As a background we've been friends since high school.  Actually he was my first kiss.  We got together last year when my Dad passed away unexpectedly and he traveled to be with me at the service and after.  Shortly after we started our relationship he was hospitalized for his kidneys and after that he tried pushing me away as well.  But he wasn't nearly as sick then, or as determined to be alone

Title: Re: Newbie who needs help
Post by: jagermiester on August 04, 2011, 06:39:49 AM
Also, journaling is an awesome tool to help in depressions.  Get him a notebook and let him know it's for his thoughts.  Some days he may only write 3 words, I hate today and others he may write 30 pages.  It seems to really help when you can take all those jumbled thoughts up in the head and put them on paper.  He can even draw, do anything he wants in his journal. 

Just a suggestion.  Prayers lifted.

Thank you, that really helps.  I do know what you mean about just being quiet.  I did that when I was there and it seemed like the right strategy.  It's so difficult knowing what to do being so far away though.  I didn't know whether to keep sending him messages or to back off.  My last message to him was Monday after I got back from my trip down there. I said that I'd never give up on him and that I'd always believe in him.   I think he could possibly be having self esteem issues too. 

As a background we've been friends since high school.  Actually he was my first kiss.  We got together last year when my Dad passed away unexpectedly and he traveled to be with me at the service and after.  Shortly after we started our relationship he was hospitalized for his kidneys and after that he tried pushing me away as well.  But he wasn't nearly as sick then, or as determined to be alone
Title: Re: Newbie who needs help
Post by: Meinuk on August 04, 2011, 06:42:44 AM
Hi Dawn,

My advice:  Just love him, don't push him, try not to compare who he was with who he is right now, just love him.  That love may change, be prepared for that.  You can educate yourself about CKD, dialysis and depression, but you will never really know what is going on in his head.  He may not really know what is going on in his head for that matter.

If you move, since it was already planned, do it, but don't sacrifice yourself.  Get some counseling for YOU.  Maintain perspective, but still love him.

I will never understand how CKD affects men.  They seem to assign so much importance to their sexual performance (well, I guess that society does too) that they feel their life is over if they can't get aroused physically or have children.  It is a huge thing for them to come to grips with, and many never do.  But you can't come to grips for him, you can just love him, let him know that you are there.

I hope that things work out for you, and I hope that once he settles into a routine of dialysis, his depression evens out.  It is a HUGE life change, one that makes you contemplate your own mortality and your place in this world.  It is probably the biggest hurdle that he will face in his lifetime.  You can't do that for him, but you can stand beside him and let him know that you are there.  Keep living your life, and include him in it.  Don't sacrifice yourself, because if you do, then you both will be lost.

On a happier note, when I was sick, I didn't just push people away, I left.  I went through it all alone.  People who loved me may have worried, but they knew not to intrude.  Slowly, I came back to them, but it took a lot on my part, and on theirs.  BUT, and it is a big BUT, I am a woman, and I am reconciled to my fate.  I never had any dreams or aspirations of a "normal" life.  Kidney disease was not a shock to me.  But I still pulled away anyway. Your boyfriend is in much deeper waters that I ever was. 

Good luck, and I hope that the men of IHD can give you some good insight into what they have experienced.

 :grouphug;

Anna
Title: Re: Newbie who needs help
Post by: dawn24 on August 04, 2011, 07:10:47 AM
Oh, I'd def be moving down there for ME, I've been wanting to move LONG before we started our relationship

The notebook thing gave me an idea . . . I could make him a 'Dialysis sucks' box with little slips of paper so he can write down when he is feeling overwhelmed and put it away in the box.  And something like a 'stabbing doll' or something he could break when he gets frustrated.  Or is that a cheesy idea?

What else do dialysis patients need that they don't think of and then it's a pain to go get?  I'm thinking like along the lines of soothing peppermint for headaches, etc, ???
Title: Re: Newbie who needs help
Post by: mcclane on August 04, 2011, 07:46:51 AM
I remember when I was first told my kidneys were shot, and dialysis was the only route to go.

I was depressed, and didn't know what to do so.  Just like your b/f, i wanted to be alone with my thoughts as well; I was worried about working and doing dialysis, traveling, how it will impact my life, diet, finance, ... All those things seem to come up at once.  My wife was very supportive, and said we'd get thru this as a team.  If it wasn't for her, I think I'd still be depressed.

Just provide him with support, but respect his 'space' and alone time as well.  He will get over it, but it may take time for him to figure out what is going on and to develop a system (ie. balancing dialysis and life).
Title: Re: Newbie who needs help
Post by: dawn24 on August 04, 2011, 03:48:12 PM
Thank you.  Sounds like a tricky path . . . give him his space, but let him know I'm 'there'.  I'll do my best, and that's all I can do.  I really, really appreciate the insights from those of you who are going through this  :grouphug;
Title: Re: Newbie who needs help
Post by: MooseMom on August 04, 2011, 04:08:13 PM
I don't know either your bf or you, but long ago I had a friend who went through tough times, and he reacted in a way that reminds me of your bf.  He pushed people away; he was angry and sad over a loss that was shocking and over which he had no control.  Much later, he told me that he kept pushing people away as a sort of "sorting system", ie, he figured that the people who stuck around were the ones who really cared.  In other words, he was testing them, just daring them to leave.  I'm not sure he realized at the time that he was doing this.  But it makes me wonder if your bf is unconsciously "testing" you, just waiting for you to leave him.  I'm not saying that this is what he is doing, but it is a possibility.

He doesn't know how to find comfort.  I've been there.  My husband asks me, "What can I do to help?", and I invariably reply, "If you can't cure me, then I honestly don't know what anyone can do to really help."  Chronic, dangerous illnesses like ESRD can be very isolating; it's a battle that you really have to face on your own, and it can be a very lonely road.  I find little distractions and small pleasures, but there is no escaping this very, very dark cloud, and it's that lack of an escape route that is so soul-destroying. 

Some people accept their fate, others fight it knowing they cannot win.  I hope your bf finds his way.
Title: Re: Newbie who needs help
Post by: RichardMEL on August 04, 2011, 11:21:03 PM
Dear Dawn,

Welcome. to IHD.

Second of all: *hugs*  :grouphug; :grouphug; :grouphug; :grouphug;

I don't want to pontificate too much on this topic, as I feel I'm not really qualified experience wise to give anything useful since I've never been in your situation.

Seems to me your bf is seeing death all around him - both literally and emotionally; he's lost a parent to a chronic disease, he has one too and obviously feels now that D is becoming a very real and soon-to-be reality, that he is facing a death too - both from a perceived shorter lifespam (hence the comment about "10 years") and of his lifestyle.

Like you say - deeply depressed - and harder still if he won't recognise it and/or seek counselling and aid.

For what it's worth I kind of agree with the notion to just be there for him. You've pretty much done all you can - with a very sweet surprise visit, and letting him know how you feel. You couldn't do much more even if you were there, and perhaps even make things a bit worse in terms of your relationship by pressuring him (not from your side, but the way he may perceive your caring actions)....

In many ways this is only a situation HE can drag himself out of - either letting time hopefully lessen the impact of the recent death, where grief can perhaps not be so dominant - and perhaps even coming to terms himself with this next phase of kidney diease for him.

I think at this point trying to tell him all the obvious truths that going onto dialysis does NOT mean he's only got 10 years (or much less) to live, or that he can live a relatively full life (specially on PD) and all that. I don't think he's at the point where he's ready to accept those points of view.

Just show your support, and try not to burden him with expectation - by that I mean that HE may feel like he is expected to do this, or that, for you. That kind of thing may push him further into his shell.

Hang in there. You sound like a loving partner trying to do all that you can, and it is wonderful you also have the support of his family. I think though there's only so much you can do - much of it has to come from within.

My fingers crossed that he will at least realise that he needs to seek some help - be it from family/friends/you and/or a professional.

My best wishes in this difficult situation.
Title: Re: Newbie who needs help
Post by: Bajanne on August 04, 2011, 11:43:13 PM
No advice, just hugs :cuddle; :cuddle; :cuddle;  Your IHD family members have been giving you excellent advice.
Please know that my caring thoughts and prayers are with you two all the way. I admire your tenacity.  I am sure it will pay off.
Title: Re: Newbie who needs help
Post by: Ang on August 05, 2011, 12:45:24 AM
 :welcomesign; Dawn24


  As all above have said.

  maybe things will change for the better when you move , as you will be closer at hand.

   And able to assist heaps more being in the same town
  wish you all the best :thumbup;
Title: Re: Newbie who needs help
Post by: Poppylicious on August 05, 2011, 04:09:38 AM
 :welcomesign; Dawn! 

I'm afraid I have no advice to give you (I think everybody above has done a sterling job with that already) but I will say that you should keep in (daily) contact.  Maybe your messages don't need to mention anything about him or his situation; just a funny or frustrating anecdote from your neck of the woods, the sort of message which clearly doesn't need a response but lets him realise that you're thinking of him, keeping him in the loop and that you want to share EVERYTHING with him.  How fabulous that you (both) have the support from his family.  Obviously I don't know either of you, but with the support from his family I think you'll both come through this.  It will take time, but a little patience works wonders.

*huggles* for both of you.   
Title: Re: Newbie who needs help
Post by: looneytunes on August 05, 2011, 05:58:00 AM
Hi Dawn and  :welcomesign;

Bless you for being there for your bf and wanting to go the distance with him.  Learn all you can about ESRD and the potential challenges he may face.  But, as others have said, he has to come to terms with it himself and really all you can do is be there for him  when he's ready to continue a relationship.   Offering support and friendship may be just what he needs for now. 

You'll be in my thoughts and prayers. 
Title: Re: Newbie who needs help
Post by: phyl1215 on August 05, 2011, 06:55:35 AM
Welcome.....your doing the right things, hang in there an he will be feeling better once he gets on PD and sees he can still do most things he always did especially if he can get on the night cycler in a month.  Good Luck
Title: Re: Newbie who needs help
Post by: Sonarman2 on August 05, 2011, 08:25:25 AM
I need help also. I'm still working on how this site works. Sorry if it seems like I'm using Dawn's thread without regard for her situation, that's certainly not the case. I wish you well. S2
Title: Re: Newbie who needs help
Post by: dawn24 on August 05, 2011, 09:34:42 AM
What an awesome group of people you all are!  It is so valuable to get advice from all of you and I really, really appreciate it.  Thank you.

I did send him a message and a song last night:  Pink F*in Perfect.  And I did say no need to reply, just that I'm there for him if he needs me.

ETA:  I do admit that there are some days I wake up and wonder WHY I am fighting so hard for him and this relationship.  The emotional toll would be a lot less if I just gave up and found my own cave.  But the decsion to fight for 'us' was never even really a consious decsion.  Just something I did . . .
Title: Re: Newbie who needs help
Post by: dawn24 on August 06, 2011, 04:59:28 AM
Finally heard from him last night.  I sent an email about death, where we go, and what we see when we die.  How the will to live is so annoyingly strong and how I understand how tired he is and how he doesn't want to do dialysis and be hooked up to a damn machine every night.  Just so he can get up, go to work, then go home and hook up to it again.   His reply was a jumble of very sad and desperate song lyrics  :'(  But at least it was a reply  . . . .
Title: Re: Newbie who needs help
Post by: Meinuk on August 06, 2011, 06:02:32 AM
Dawn, men are weird that way.  Sometimes communicating through music is the only way that they can communicate.  Don't grasp at straws, and don't read too much into what the words are, just look at it the way that you see it, an attempt at communication.

Just sharing those small things are a good start to reaching him in his darkness. A call every once in a while, a card or letter or package of things that may be interesting, sharing snippets of life.  These are a reminder that he is not his disease, and that life does go on, and that you want him in it. Most of all, let him be a man.  Ask him the same question you would ask him.  Ask him to help with your move, even if it is just stacking books.  Ask him to see a movie with you.  If he doesn't want to go out, then watch a move together at home. don't talk about doctors, dialysis or death unless he brings it up.  But show him that you are comfortable with all of it, and if you aren't comfortable with it, share that too.  If don't know what your life would be like without him in it, tell him. If you are scared, let him comfort you.  Love is a two way street.  If he isn't up to this emotionally now, I hope that he gets to a place in his life where he will be, for your sake.

I was at a PKD function last year when a woman told us her grandfather's secret to a happy marriage (his wife was on dialysis, and he started the PKD Foundation)  He said that when you are married, you have to be able to give 90% to your spouse. Now, on the surface, that sounds pretty intense, but when I really looked at it, I realized that even he was holding something back, that 10% that was his, and his alone. For me, I can live with 10%, as long as the person that I am giving my 90% to shares it with me.

Dawn, I am just cautioning you to keep that 10% for yourself.  It is like an airplane, put on your oxygen mask first.  Loving someone who is depressed is not easy, and it takes an amazing strength not to be consumed by it. 

There is a great thread here called "You know you love a Kidney Patient"  http://ihatedialysis.com/forum/index.php?topic=19386.0 (http://ihatedialysis.com/forum/index.php?topic=19386.0)

 :grouphug;

Anna
Title: Re: Newbie who needs help
Post by: monrein on August 06, 2011, 06:54:53 AM
 :grouphug;
Title: Re: Newbie who needs help
Post by: MooseMom on August 06, 2011, 10:51:46 AM
Very wise reply from Meinuk!
Title: Re: Newbie who needs help
Post by: daveosaurus on August 06, 2011, 12:36:55 PM
Dawn, I'm going through the same thing your boyfriend is only I don't have anyone to help me. Your boyfriend is very lucky to have you. Even though it may seem like he is pushing you away he really needs you now more than ever. He will start to feel better after a couple of weeks of dialysis, both mentally and physically. Try to get him out of the house for awhile. Go out to eat or see a movie. It will lift his spirits. Above all, bless you and hang in there.
Title: Re: Newbie who needs help
Post by: dawn24 on August 06, 2011, 02:01:25 PM
I'll keep trying. Thanks for all the advice and encouragement. 

He and I have both been very 'dark' the past few years.  Me because I don't have any family left and I'm basically on my own at the age of 38.  It gets quite overwhelming at times.  Him because of his struggles with his diabetes the past twenty years (type 1)  And since his Mom just passed away in June reaching out to him on "our dark level" seemed to be the way to go.  Talking to him about death--his own, his Mom's, my parents . . . .because I know those are the thoughts he's been swimming in . . .I know from experience because I just wanted to give up when I lost my Dad last year and I'm not even in kidney failure.
Title: Re: Newbie who needs help
Post by: jbeany on August 06, 2011, 03:56:36 PM
 :grouphug;
Title: Re: Newbie who needs help
Post by: rsudock on August 06, 2011, 11:13:54 PM
Hello Dawn and WELCOME to IHD!!

I agree with MOOSEMAMA when she says that maybe he is testing you. I know with my boyfriend (I am the one with ESRD) I would really push him to see where his breaking point was...it wasn't right, but it is the truth. Being the sick person you start to think about what your life is doing to the other person. You do think about how much the other person is sacrificing to be with and love you. I think this is even more true for people who are not married first before they get sick. You think about the burden you may become on the person...it is very frustrating for both parties.

Some things that may help, things that meant a lot to me when I was on D...I know your man is on PD so it maybe a little different: go to the D training session with him, cook him dinner, make him a playlist on his IPOD of upbeat music, slow dance in the living room, write him a love letter.... :)

Just be there when he needs you and give him space when he needs that...it is hard loving someone who is trying to work all this kidney stuff out but he will come back surely but slowly...it takes time to adjust to D. Thank you for being a caregiver!

Good luck friend,
xo,
R
Title: Re: Newbie who needs help
Post by: dawn24 on August 08, 2011, 09:10:41 AM
Thank you, I wonder if this could be the case . . . Got a strange text from him last night while I was asleep.  All it said was "have a ?"  I responeded but haven't heard back from him.  I'm slightly worried as his Dad is out of town right now and he's home alone. . . .

Back when he first hit Stage Four in May he had a meltdown during one of my visits, literally cried on my shoulder saying he was dying.  He had actually even begun to get rid of his stuff.  I told him then and a year ago that I'd give him a kidney.  He said he didn't want me to do that because he was afraid something would happen to ME
Title: Re: Newbie who needs help
Post by: lmunchkin on August 08, 2011, 07:12:13 PM
Oh dawn, this don't sound good at all!  Have you still not heard from him?  I understand his reaction totally!  My husband was not going to take mine either, even if he had been eligible!  It's ok though, we have adjusted pretty well now!

You may not be married to this guy, but he has been in your life for quite awhile!  You probably feel like his wife!  I know from your posts, that you really care about this guy, and had you both married, you would have done what most of us have done for our spouses, "tend to their needs" in everything!

If he see's tying you down to his disease as not what he wishes, then please understand from his side! He knows you have suffered many losses in your life and doesnt want to put you through his! If you don't get married, its still not the end of a beautiful friendship is it?  Just be there and check on him ever so often, let him know you would be there if he needs you for anything?

It breaks my heart to hear of his pain and what love he has to not want you in to it with him!  That is admorable, but it still leaves your heart Broken, nonetheless!!

I hope & pray that things work to some good for you both!

lmunchkin    :kickstart;
Title: Re: Newbie who needs help
Post by: RichardMEL on August 08, 2011, 08:03:23 PM
phew tough stuff. Very tough.


One small positive thing, to me anyway, is that although it is erratic and sad/worrying he's STILL communicating... even a little. So there's some hope there IMHO.

I hope whenever he pulls out of this depression he realises how special you are and good to him. I know I'd love someone like you in my life (be it friend or otherwise) who cared so much and would stick in there despite all the pushing (as Rachael says, maybe it is some kind of weird 'test' to see how much you really care...)).

You're probably doing more to help him than you realise. The regular contact, without pushing for stuff, just reminding him you're out there and give a damn, is perhaps supporting him in ways neither of you will ever know.

Hang in there.

 :grouphug;
Title: Re: Newbie who needs help
Post by: dawn24 on August 09, 2011, 07:30:08 AM
Thanks for the encouragement.  Still no response  :(  I wonder what that was all about?

He has his cath placement surgery on Monday.  I've gotten him a couple of T-shirts from the online store and made a 'dialysis sucks' box for him to put his thoughts into when everything gets overwhelming. 

I welcome and and ALL advice on what encourging things to 'say' to him.  What did people say to you that helped?  What pi$$ed you off?

My realtor is coming over tonight so I can list my house.  Anyone want to buy a haunted house? 8)
Title: Re: Newbie who needs help
Post by: st789 on August 09, 2011, 08:30:45 AM
Step out of the house would be a way to lift up the mood.  Whenever, the kidney stuff is overwhelm, change up a bit to other focuses.
Title: Re: Newbie who needs help
Post by: dawn24 on August 09, 2011, 08:38:46 AM
I'd love nothing more that to take  him to a movie, but can't really do that since I'm 1500 miles away   :(  Gotta get my house sold and my butt moved down there first
Title: Re: Newbie who needs help
Post by: rsudock on August 10, 2011, 10:17:30 PM
Dawn one thing that honestly helped me deal with D is when people stepped up, called the tranpslant center, and got evaluated for transplant....maybe it would give him hope.....

xo,
R
Title: Re: Newbie who needs help
Post by: dawn24 on August 11, 2011, 05:37:50 AM
I'd like to, and I already said I'd give him one.  Don't even know where he is in the process of getting approved yet.  His Dad is supposed to call me after the cath placement surgery on Monday so maybe he'll know that information.  Thanks!
Title: Re: Newbie who needs help
Post by: lmunchkin on August 12, 2011, 05:21:31 PM
Have you heard anything yet?  I know you must be beside yourself right now with worry.  Please let us know as soon as you hear something, okay? We are thinking and praying for you both.

lmunchkin     :flower;
Title: Re: Newbie who needs help
Post by: dawn24 on August 13, 2011, 04:14:16 PM
I've been taking everyone's advice and just "talking" to him through email.  Saying I don't need a response, it's just me talking to him.  I understand grief, but not kidney failure.  I've talked to him about the grief, saying things I know only those of us who have been there would 'get'.  Then saying I'll never understand the kidney failure but I've been educating myself and here when he needs me, that the tube or machine doesn't bother me.  Last night I got a picture of his foot.  Seems it's infected and might need to be amputated, the leg as well.  I responded like that wasn't a big deal to me, love him appendages or lack there of. Made some jokes. His texts were very dark and suicidal.  I didn't try to "pull him out of it"  just let him be the way he needed to be and said I understood but to try to hang on a little longer.  But today I actually got a response to one of my texts that wasn't from 'the dark place'.  It was a response like normal, every day conversation.  My heart soared :)
Title: Re: Newbie who needs help
Post by: rsudock on August 13, 2011, 04:19:09 PM
  It was a response like normal, every day conversation.  My heart soared :)

 :cuddle;   :thumbup;


so sorry to hear about the possible amputation  :'(

xo,
R
Title: Re: Newbie who needs help
Post by: dawn24 on August 15, 2011, 05:56:58 AM
I don't know how 'true' the amputation information is, or if it was just a test to see how much I would stick around for. . . .   I know it IS a very real risk with diabetes and a limb infection, but don't know if it's to that point yet.  Today is the day he has his cath surgery.   He hasn't responded to me since Saturday.  I reached out to his friends Saturday and they've started to rally around him.  I don't think they knew just how seriously ill he's been.

I got near my breaking point this weekend but then reminded myself that I still have all my appendages and don't have to hook myself up to a machine every night to clean my blood, so life is good.
.
Title: Re: Newbie who needs help
Post by: dawn24 on August 15, 2011, 08:01:36 AM
Ugh.  Just got a message from his friend that took him out on Sunday.  He said he didn't seem all that depressed.  Am I the ONLY one he shows his darkness to?
Title: Re: Newbie who needs help
Post by: billybags on August 15, 2011, 10:49:00 AM
Dawn, not to be funny but you sound like you are doing all the running here. Are you sure he wants you to move near him, I would really search my heart before you do this. Sorry if this sounds, well not nice.
Title: Re: Newbie who needs help
Post by: dawn24 on August 15, 2011, 10:58:33 AM
Yes, I'm from there and I've been wanting to move back home for five years.  DBF has always been dark, moody and introverted in all the years I've know him. And he's always been that way with me.  Told me things he doesn't share with anyone else, like when he started getting rid of his stuff when he hit Stage 4. . . . I still refuse to believe that he suddenly stopped loving me because his Mom died and he has to do dialysis.  After he told me in May that I've always been 'the one'.    I'm going to be there when he needs me, darn it!  I don't think he's told his three closest friends about the kidney failure  :(
Title: Re: Newbie who needs help
Post by: lmunchkin on August 15, 2011, 08:31:18 PM
Now, I dont mean to say that he is going to have some amputation done, in fact, I pray not!  But Dawn, if he has diabetes and has not taken care of it, more than likely, not seeing the pic's or anything, he will have to have some kind of amputation!  This is probably, Im sure, what caused his Kidneys to fail.  Now with CKF and diabetes, the two mixed together is "almost" impossible to avoid some sort of amputation!  Now that doesnt mean he will, just saying from experience, that it is likely, over time, that it will be unavoidable! Does that make sense?

My husband had Diabetes and did not know it!  He never went to doctors or anything!  When he got sick and went to ER, they admitted him immedicately!  He almost died right then and there! He was diagnosed with ESRD, due to Diabeties and High BP.

He constantly had problems with his feet.  Gangerine infection, then amputation of toes till He had below Knee amputation and no toes (half foot) on the other!  I also, will not tell you that it has all been rosy!  It hasnt!  And if after all the things people have told you on here, you still want to be with this guy, then you must be prepared for these things to happen! 

I have been married to my husband 10 yrs when this dreadful disease happened.  You are not married to him and to go into this with him WILL effect your life immensely!  Your eyes are wide open to what he maybe facing!  The fact that you want to move next to him is very Commendable! It is also good that you are learning about this stuff.  Arm yourself with knowledge so that you might advocate for him!

Praying for you and him!

lmunchkin   
Title: Re: Newbie who needs help
Post by: dawn24 on August 16, 2011, 05:20:05 AM
Oh yes, I know it's a very high possibility that he will lose some limbs or digits.  In fact I knew that a year ago, and we even talked about it.  Not an issue for me at all.

His cath placement surgery yesterday went well, and he got to keep his foot (for now).  His family was supposed to contact me and let me know how it went, but he actually did it himself!  This is the guy who has not been contacting or responding to me at all unless it's very sad, desperate, dark messages.  Baby steps :2thumbsup;
Title: Re: Newbie who needs help
Post by: Bajanne on August 16, 2011, 07:49:25 AM
We are happy for the baby steps!  Looking forward to the teenage, adult, and then giant steps!! :cuddle;
Title: Re: Newbie who needs help
Post by: lmunchkin on August 16, 2011, 05:08:05 PM
Dawn, any idea why that is?  His coming to you only when he is sad or dark, and not his family?  Are the times he is talking or with you more sad and dark than happy times?  If that is the case, I really think there are some underlying issues going on with this man!  I mean I don't know, Im not doctor or anything, but it just seems odd to me!

Sorry, I don't mean to pry, it just that Im not only concerned for him, but you too!  You seem like a sweet & caring young lady!  I believe, correct me if Im wrong, that you said he has always been this way?

lmunchkin     :kickstart;
Title: Re: Newbie who needs help
Post by: dawn24 on August 17, 2011, 06:16:08 AM
I've known him since I was 14, he's always been introverted, slightly insecure, and his is one of those famlies that 'doesn't share feelings'.  He only really talked to his Mom, and even then didn't tell her all that much.  In fact, apparently when I was 16 I said something that hurt his feelings and I didn't find out about until 20 years later.  Yeah, he carried that with him all that time and never said a word to me even though we hung out as friends off and on for the next 20 years.  It was just this past year when my Dad died and we started dating that he started telling me his deepest fears, hopes, and dreams.  I saw a very intense side of his personality that I didn't know existed.  We really leaned on each other and opened up to each other about EVERYTHING.  I can only surmise it was because I myself was so raw with grief that all barriers were down.

I see it as a good thing that he's using me as a 'go to' person to vent to when he's overwhelmed.  Him talking, even if it's 'bad, dark stuff', is important because otherwise he wouldn't be saying anything at all about his grief and the effect having to go on dialysis is having on him. 

I do have to admit though that today I'm very tired and overwhelmed myself and just want to shut down.  I feel very lonely, I have no family left and I really miss him, our connection was very strong on many levels.
Title: Re: Newbie who needs help
Post by: dawn24 on August 18, 2011, 06:32:58 AM
Got another message that wasn't from the 'dark place'.   I'd sent him a care package.  He loved it and said the "Dying for a Kidney" t-shirt made him smile  :bandance;

All your advice is paying off  :thumbup;  I don't post in threads much but I am learning SO much from this board, this is a great place
Title: Re: Newbie who needs help
Post by: boswife on August 18, 2011, 08:12:35 AM
  :2thumbsup;  Im rooten for ya :)  He's a lucky man and Im getting the feeling he may be realizing that.  Hope so  ;D ..  Best wishes on getting your move on  ;)   And yes, this board is amazing isnt it.  Saved a lot of us from the depths of despare im sure.