I want to quit sooooooooooo bad

[rfranzi]

I had dialysis yesterday, and it seemed endless. It has been hurting, stinging, throbbing, infliltrating, fistulagrams, balloons, rogue veins, narrow arteries, and it's been just over 4 months. I went to bed crying and I woke up crying. I am as alone as I can ever remember. I have a son, but he has broken my heart and he isn't around very much. I was a single mom, didn't date for the last ten  years, put myself through college twice after I had my son, and sacrificed greatly so that he could go to college and only have a summer job. This hurts more than anything I have ever known. On top of the emotional part, (I have PTSD, anxiety disorder, etc.....) - they are not giving me the meds I need, first of all, because I admitted to some experimentation in the 70s. My reality seems to be sinking deeper into everything I stand against - the relinquishing of personal freedom. The reasons for living. Being kept alive artificially. If I owned a gun, I'd be dead by now. It's that bad. I just don't want to do this anymore.

I was turned down by Swedish (who I  didn't like at all anyways) for a transplant, but went to Virginia Mason and was told I was accepted, but then the coordinator said she still had to do her part with the insurance, etc., so I am waiting for the official word. I moved into a better apartment last month (my son never offered to help and I am still, unpacked.) I had to hire help and I have still not recovered or settled in. I thought it might make a difference because my last place was a depressing stop gap while I fought for my disability.

But, it doesn't seem like enough. All I do is go to dialysis, spend time alone, try to cook and clean for myself, with no appetite and no energy. I have tried to hire help and food services, but I have to watch things as I am not wealthy. I am handling everything from the bills to finding help myself, and it is not easy to say the least. When I am not at dialysis, I am spending my days off on the phone with doctors or on here or something like that, documenting the latest damage, so I never get a break. There is no joy to offset this experience.

I would go out and meet new people if I had the energy, but right now my whole world is doctors and pain. I just don't know if I can make it until a transplant comes along. I don't even know when and if my acceptance will be official. More torture. The minute I got this diagnosis, I knew I was screwed. I've been severely depressed ever since. And yes, I am in counseling.

[chinksnicky]

We all feel like you some days,I am also alone and it's really hard sometimes.it is really something to come to grips with that you will never be cured no matter what you do,transplants put you at risk as well. so I just try to keep involved with self treatment,and I have animals and I garden to keep active.one day at a time is all you can do,at least you have a son,I have no one,he may realize he needs you yet.I've been on dialysis since April 2010,how long for you? I really wish for you to be strong and keep fighting,just show everyone you won't be beaten!Good luck dear.           Nick

[Traveller1947]

Hi, Robin.  I was just reading back over your last two months of posts and I find such wisdom and good advice for others who have been on the edge, just as you are yourself now.  The gist of what you have said was, that the best reason to keep going is to be around for any improvement that may be around the corner.  I found mySELF encouraged my your words!  This is a very tough disease and we have to be tougher in order to keep going.  There are tools that can help us tough.  An antidepressant could make all the difference, if you give it a chance.  If the doctor you have now won't prescribe one, find another doctor!  It's outrageous that he /she would deny you a medicine that could help you!
  You speak so lovingly of your son in earlier posts.  Is the rift between you so unmendable?   Can you talk things out with him, once you feel calmer?  I hope so.  I don't have children, but I know if I did, I would want them close to me, no matter what...
About personal freedom, well, it's different for each of us, I guess, but I was one of those flower children of the 'sixties, so I know a thing or two about being free.  Kidney disease and the need for dialysis binds us physically, it's true.  But nothing can bind my mind and spirit and that's true freedom.  I can only wish the same for you.
All the best to you , Robin.  I'll keep you in my prayers.

[boswife]

These posts open up lots of thoughts and lots of healing..  I too have some of the same 'issues '(anxiety etc) (hubbys the one on D)  and between dealing with real life, and our inner turmoil is sometimes just to much to bear.  So many have spoke of the depression (clinical or other) that comes with kidney failure,  and and that they have found help  with such things as 'antidepressents'.  I too cant believe that your dr would deny you ANYTHIG that could help you.  I surly encourage you to do a switch (like you dont have enough to do    ) of drs to someone who will help you with this.  You do have a WHOLE lot of crap on 'your plate' and you need assistance. 
And your son.. Kids can hurt much more than they even know.  Though i dont know  his reasoing, he may  be hurt himself watching his mother be, well,,, not the pillar of strenght he wishes you to be.  This is a hard diesease, and it really hurts more than the sick.  My heart is torn up with my hubbys ups and downs, and mabie(for now)  it's just to much for your son..  I wish this to resolve for you both.  Our children are our hearts.. I know that when my mother was at her worst, i became distant.. How sad, how protective of 'myself' i became.  I had her, and my hubby and i almost lost my mind.. Thank God i came around months before it was too late.  I wish goodness between you two..

and Traveller....   flower child of the sixties... Yes, those were the days my friend,,,, we thought they'd never end..  God bless all our hearts and bring us peace and comfort

[Jean]

I am so sorry, it appears you have nowhere to turn. Try to take things one step at a time. You can only do so much. Set goals for yourself. I do that every day and tho I rarely achieve them, I still keep busy keeping track of them. I think the rest of the folks on here are right, your son may just be hurting also and afraid for something to happen to you. So, if you can, be the bigger person and make up with him. Dont let life go just because of the frustrations. I do know how you feel, some days I would just as soon not get out of bed, but you just cant do that. Enjoy your new apartment and set yourself up to create a nice home for you. Best of luck and Best wishes to you.

[Whamo]

We've all been there.  Try to adapt your lifestyle to dialysis.  It helps.  You never really get used to it.  You encounter ups and downs, but it keeps you alive.

[Rerun]

You have a reason for being here.  Maybe down the road you can comfort someone else.  In the meatime I wish you could kcik your son in the butt.

         

[plugger]

Rfranzi,

Your problems with your son reminded me a lot of the problems my brother had with his sons.  He went through a bitter divorce and I won't mention all my former sister-in-law put my brother through, but I will say she did manage to turn my nephews against my brother for awhile.  It tore him up, but he let his sons know he would always be there for them and continued to write them letters.  As they got older and got away from the influence of their mother and remembered the times before the divorce, they came around.  Now when I see my brother he has great stories his sons have told him about what they are up to - and we both got to attend the one nephew's wedding this past January!

I know it has to be hard and I know my brother was always afraid to press his sons too hard during that dark period, but he did manage to let them know he would be there when they were ready.

[jessicalynn42]

I was like that too no job no money and no one to help me. I don't want my son to see me this was. So i moved into public housing rent by income. Got me a little cat to make my apt. alittle nicer and i got help antidepressant will help. If your doctor wont help you then find another. There is a cream that deaden the excess for treatment. Your center can help with that. It was the one thing that made my treatment better. You just have to find a reason to keep fighting. Try a church (no i am not preaching) they will give you something to do decides treatment and empty home. I also started to do some voluntary work at at local church thrift store. It did wonders for my mood. Also talk to your therapist she/he should be able to find you help. When i was that way mine called my doctor and explained that pain relief is needed NOW. and he did listen. I still live alone cook and clean myself. So if the apt is a mess then that is just the way it will be till i have the time. No one will judge you for a messy house. If they do then ask them for help LOL. Anyway you will find away I will keep you in my prayers. My prayers led me here and i hope that we all can help you survive. Good luck 

[Whamo]

rfranzi,  Do they give you Epocrit and Vit D?  That helped me a lot. 

[rfranzi]

We all feel like you some days,I am also alone and it's really hard sometimes.it is really something to come to grips with that you will never be cured no matter what you do,transplants put you at risk as well. so I just try to keep involved with self treatment,and I have animals and I garden to keep active.one day at a time is all you can do,at least you have a son,I have no one,he may realize he needs you yet.I've been on dialysis since April 2010,how long for you? I really wish for you to be strong and keep fighting,just show everyone you won't be beaten!Good luck dear.           Nick

Thank you so much for your kind words of support. You're not alone anymore. Please feel free to write me anytime - my personal email is writesoul@msn.com.

[Big E]

rfranzi, when I feel the way you describe I take little weekend "staycations" to nice places within a few hours' drive.  Sometimes just a change of scenery works wonders. I spend a lot of time on the Trip Advisor website checking out hotel reviews, which is very entertaining in itself! Just planning a trip can be fun and helps keep your mind busy.

I think people just need something to look forward to.

[chinksnicky]

We all feel like you some days,I am also alone and it's really hard sometimes.it is really something to come to grips with that you will never be cured no matter what you do,transplants put you at risk as well. so I just try to keep involved with self treatment,and I have animals and I garden to keep active.one day at a time is all you can do,at least you have a son,I have no one,he may realize he needs you yet.I've been on dialysis since April 2010,how long for you? I really wish for you to be strong and keep fighting,just show everyone you won't be beaten!Good luck dear.           Nick

Thank you so much for your kind words of support. You're not alone anymore. Please feel free to write me anytime - my personal email is writesoul@msn.com.

Happy to be of  some help,please keep going! I will write you soon.

[rfranzi]

Hi, Robin.  I was just reading back over your last two months of posts and I find such wisdom and good advice for others who have been on the edge, just as you are yourself now.  The gist of what you have said was, that the best reason to keep going is to be around for any improvement that may be around the corner.  I found mySELF encouraged my your words!  This is a very tough disease and we have to be tougher in order to keep going.  There are tools that can help us tough.  An antidepressant could make all the difference, if you give it a chance.  If the doctor you have now won't prescribe one, find another doctor!  It's outrageous that he /she would deny you a medicine that could help you!
  You speak so lovingly of your son in earlier posts.  Is the rift between you so unmendable?   Can you talk things out with him, once you feel calmer?  I hope so.  I don't have children, but I know if I did, I would want them close to me, no matter what...
About personal freedom, well, it's different for each of us, I guess, but I was one of those flower children of the 'sixties, so I know a thing or two about being free.  Kidney disease and the need for dialysis binds us physically, it's true.  But nothing can bind my mind and spirit and that's true freedom.  I can only wish the same for you.
All the best to you , Robin.  I'll keep you in my prayers.

Thank you for your kind words. I did, in fact, talk with my son. And he did respond well. It is an ongoing process, as this is all new to both of us. Sometimes when I am upset or disappointed with him, it is easier to say it here than to him. He advocated for me this week, and I had a better treatment, less painful for once. It was a long time coming, and I needed a day like that to offset all the bad ones that were piling up. I got the official word this morning by phone that I am on the list, but they had to ask for me to go and give blood for a PRA test? God, they couldn't just leave me alone for one single day to enjoy the news. That's what I mean, not enough good days, not enough of a break. Did I mention I hate doctors? Anyways, thanks. I really appreciate having this site, and people like you, to be able to tell the truth to, even if it is sometimes a shifting reality.

[rfranzi]

These posts open up lots of thoughts and lots of healing..  I too have some of the same 'issues '(anxiety etc) (hubbys the one on D)  and between dealing with real life, and our inner turmoil is sometimes just to much to bear.  So many have spoke of the depression (clinical or other) that comes with kidney failure,  and and that they have found help  with such things as 'antidepressents'.  I too cant believe that your dr would deny you ANYTHIG that could help you.  I surly encourage you to do a switch (like you dont have enough to do    ) of drs to someone who will help you with this.  You do have a WHOLE lot of crap on 'your plate' and you need assistance. 
And your son.. Kids can hurt much more than they even know.  Though i dont know  his reasoing, he may  be hurt himself watching his mother be, well,,, not the pillar of strenght he wishes you to be.  This is a hard diesease, and it really hurts more than the sick.  My heart is torn up with my hubbys ups and downs, and mabie(for now)  it's just to much for your son..  I wish this to resolve for you both.  Our children are our hearts.. I know that when my mother was at her worst, i became distant.. How sad, how protective of 'myself' i became.  I had her, and my hubby and i almost lost my mind.. Thank God i came around months before it was too late.  I wish goodness between you two..

and Traveller....   flower child of the sixties... Yes, those were the days my friend,,,, we thought they'd never end..  God bless all our hearts and bring us peace and comfort

Thanks. Those thoughts have crossed my mind and more, in terms of what my son must be going through. Sometimes it's hard to get him to open up and he, like me, tries to be strong like they are in the movies. I have had to learn to reach out to him, because I think, when he looks back, he will be glad to have been there, rather than have regrets. I don't want him to have any guilt when I am gone, yet I sort of had to kick him in the ass to get him to kind of really wake up and step up to the plate. After I expressed to him that I needed him more, for instance, last Sunday, he came by Monday, and he advocated for me so that my next treatment involved more pain management. Yay! Then we were supposed to touch base during the week about getting together next, and still no word. This is kind of how it has been going. So, it is just hard. We definitely love each other, I just think he is in a little denial. He is still very young. He is really quite a wonderful young man. Thank you for your thoughts.

[rfranzi]

rfranzi, when I feel the way you describe I take little weekend "staycations" to nice places within a few hours' drive.  Sometimes just a change of scenery works wonders. I spend a lot of time on the Trip Advisor website checking out hotel reviews, which is very entertaining in itself! Just planning a trip can be fun and helps keep your mind busy.

I think people just need something to look forward to.

That is an excellent suggestion, and has been very much on my mind. My body just won't follow yet. I've been quite tired, just had the fistulagram 3 weeks ago or so. When I get just a little energy back, I would definitely try to get out, even if not very far as I live in a nice area I have still yet to know. As I once said, working my way back to lipstick.

[rfranzi]

I am so sorry, it appears you have nowhere to turn. Try to take things one step at a time. You can only do so much. Set goals for yourself. I do that every day and tho I rarely achieve them, I still keep busy keeping track of them. I think the rest of the folks on here are right, your son may just be hurting also and afraid for something to happen to you. So, if you can, be the bigger person and make up with him. Dont let life go just because of the frustrations. I do know how you feel, some days I would just as soon not get out of bed, but you just cant do that. Enjoy your new apartment and set yourself up to create a nice home for you. Best of luck and Best wishes to you.

Thank you. I reached out, and ended up talking to cousins and family members, while in other states, were happy to pitch in and help advocate over the phone or by email. In today's world where people are mobile, I have people, they are just all far away, which makes this hard and I feel places and extra burden on my son. I try to do the things for myself that I can. You are right, as the parent, it is my job to be the bigger person, and I think I did. I hope I did. We are working on it. Thank you for your well wishes, I also wish you all of the best and least of the worst.

[billyM]

you HAVE to keep going. things WILL get better. i've been on HD for 2 and a half years now. before i started , i was sleeping 18 ,19 , 20 hours a day. i was tired after eating breakfast.

I cant tell you how better i feel now , with good treatment , and watching my diet , im full of life.

my son and i have just returned from 2 weeks holiday in tenerife , where i had 6 HD sessions , and my BP before i started treatment was 120/80 , almost every day .

you DO still have a life to live , and you DO have a lot to offer your family .

Dont ever let anyone let you believe otherwise.

best wishes

[Leanne]

Please dont give up, cry a while, take some deep breaths and wake up to fight another day.  All of us have probably felt this way.  I know I have.  Sometimes I just want to stop trying, but then I think of my son and all the parts of his life I have yet to see.  That brings back my courage and my will to fight.  He is ten and when he hugs me before bed and says I love you mama.......then it hits me that I am not yet ready to say goodbye to my love, my heart.  Treatments do get less painful the more your fistula is used.  They kept telling me that because mine kept infiltrating, bruising and the pain was unbearable at times.  Turns out they were right, it has gotten better.  Hang in there and dont give up. You are important and needed in this life as we all are, even if we dont always realize it!

[kitkatz]

I have found there are times and days and weeks, maybe even months, where it is too much...dialysis is long and hard and I am tired of it!  But then, the reminder of this is one second of my life.  I got through it.  Oh the next one.  The next minute was okay. I take it one minute at a time during these times.  Then it stretches out to hours and days that things are okay.
Know that things change.  It is like the weather in some places.

[rfranzi]

What an amazing group of people. Thank you all for your support and kind words. I am definitely sort of one hot mess these days, even I have to admit it. Five months into dialysis, and it has not been an easy transition, mentally or physically. Just as I thought I was making strides with advocacy, they threw someone new and not so good at me again, and I am exhausted from fighting with my medical providers for pain management and decent care. Life looks very different through dialysis eyes, and every day, especially a non-dialysis day, is more precious. Which is why, when my son offered to get together on Sunday, I was pleasantly surprised, as I thought he was coming around. That is, until I got the instant messae on Sunday afternoon that he wouldn't be able to make it after all. Very upsetting. I find it more cruel to stand someone up than to just skip it all in the first place. I had to write him a note about how I felt, and I had to give him a swift kick in that note. I really hope some of you are right and this is all worth it. Because the shit is getting hard.....

[Stacy Without An E]

Remembering over my past eight years of treatment, I remember the first year being the worst.  Your body is trying to balance the rigors of treatment, your entire hormonal chemistry is out of whack, mood swings are a daily occurrence.  And the longer you endure treatment, the worse your body gets. 

I also understand how difficult it is when family won't support you.  My parents live in Oregon & my sister lives in Arizona.  Do I ever get calls checking up on me to see how I'm enduring?  Never.  I'm all alone too as friends get tired of hearing that I can't make an event due to illness or weakness, so eventually, they stop asking.

What I've discovered is that since Dialysis is so regulated (same days, same times, every week, every month) that sometimes you can allow it to squeeze our everything you hold dear in your life.  Personally, I LOVE movies.  But because I'm so weak these days, the thought of trying to stay upright for two hours is agonizing.  But I know that I have a little more energy in the morning when I first wake up, so I try to go to the first showing.  I know I'll need to rest for a few hours afterward, but it's worth it.

I guess what I'm trying to say is: don't let Dialysis steal what you love in your life.  It's the reason for living, treatment be damned.  I know it's cliche, but everyone on this thread is absolutely right: it does get better.  It just takes time.

And ice cream.

[JasonEb]

I guess what I'm trying to say is: don't let Dialysis steal what you love in your life.  It's the reason for living, treatment be damned.  I know it's cliche, but everyone on this thread is absolutely right: it does get better.  It just takes time.

And ice cream.

Ah-ah-ahhh...ice cream is high in phosphorus!  Dialysis patients are just supposed to suck on an ice cube as a replacement.

[Grumpy-1]

I agree with Stacy - the first year seems to be the worse for most of us.  It was for me too.  Trying to adjust physically and mentally.  While I can't say my family has abandoned me - just the opposite they have been great.  I can guess how you feel if your family doesn't support you.  For me, (different from Stacy) my close friends haven't left me out of anything.  They know I now have limits and try to include me in everything going on.  Most my friends are my biker friends and so it is somewhat easy to keep riding with them.  And they understand if I have to cancel at the last minute because of how I'm feeling at the time.   As has been said before - Keep it up and it will get better.  Also, keep coming back here - vent if need be.  Post your feelings - don't keep them in or they will drive you nuts.  Everyone here had been through what you are going through now.  The phrase "been there done that" applies very well here.  Remember D keeps you alive - it isn't life itself.  Grumpy