I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: WishIKnew on May 07, 2012, 08:35:01 AM
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So I'm reading all over this site today and we are a depressed group! I mean seriously depressed. Now, we have every right to be and I will be the first to throw my name in the hat. As a matter of fact, I see a new psychiatrist this afternoon (which took me a month and a half, a million phone calls, another preliminary appointment, and some begging to get - but that's another thread all together).
So my questions are: How many of us are working with a mental health professional to help us with this chronic illness? How many of us are not working with a mental health professional but KNOW we should be? Shouldn't mental health help be at least offered if not required to all ESRD patients (and I DON'T mean the social worker, who I found horribly disappointing and really just a paper pusher)? Do we have an emergency contact, like a suicide prevention line, we can share on this site whenever we read post of members who worry us, sound potentially suicidal? Should we have? What are your thoughts?
Diane
:flower; :flower; :flower;
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Oh, boy have I been thinking about this.
The last few years, I have grown weepy in my old age.....
Yesterday I had a bit of a breakdown and cry. I overslept and forgot I was supposed to be at church to run the Relay for Life sign-up table after 8o'clock mass. I was babysitting the night before, and it went late, so when my alarm went off, I thought, I'll just go to noon mass. I woke at 9:30 and realized I forgot, and ended up in such a mood that I lazed about and missed church, too (partly I was embarrassed to show my face, I guess).
My husband was sure I was premenstrual. I did not take offense, as I stonegate thought the same in his place.
It wasn't just the table and feeling like I'd let people down. There are a lot of things I've been forgetting and putting off, the house is a sty, we've no money to fix things up, I am in the hole every month and can't get the budget ok, and so yesterday in the shower I got overwhelmed thinking about how I forgot the table, and STILL haven't sent thank you cards out from my birthday, and what a piece of crap I am, inconsiderate, etc.
So, maybe it would help to talk to someone, because I just felt completely overwhelmed. I felt the way that I did when my dad was dying. That took over my life, and all I could do was go to work and take care of him, and I was an awful wife and housekeeper, and forgot to pay bills for a while, etc. It is really hard for me to concentrate on the minutiae of life when there's something big going on. Also my fistula surgery is May 9th, and I keep thinking of the lift restrictions, and how messy the house is, and all the things I haven't gotten done, and it is just bearing down on me.
Today I feel better. Yesterday, my husband felt bad for me, and my kitten reportedly ran downstairs when I started crying and waited on the toilet seat for me to come out of the shower. She looked concerned. That's little comforting, she is so sweet, but she shouldn't be concerned, poor baby.
I don't have the money for psychotherapy. I tried it and found out that insurance only covers half, and I already overspend every month and have no way to save money. I see a psychiatrist for my ADHD meds, but next Monday will be our last appointment for a while. I thought about calling my Kidney Foundation Peer mentor, but couldn't find her number, and had other things do with family, some just sucked it up and got dressed to go out.
I have noticed we are a depressed bunch, too. Why? Is it a chemical imbalance, or just stress? Mostly I don't like feeling trapped. I want the house to look nice, but I also want to take naps. I want to earn more money, but I am afraid that I won't get enough rest if I get a second job. I can't tell if I'm lazy or sick. I was working out, but my last kidney infection, I stopped while I was in pain and never got back to it. I want a day off to clean the house! Of a week off, I could paint, too!
:rant;
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I use this group as my therapy at times. I saw a therapist once but I got tired of talking about it especially to someone who had no idea what I was going through. I, too, don't like talking to the social worker. Everyone at the center acts like I should be so thankful that I'm on dialysis and they act confused that I'm nervous and scared for transplant. It's very frustrating. I wish I could find a therapist who has done dialysis and transplant, I'm sure I would benefit from it.
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I don’t need a therapist. That’s just one more appointment I would have to shoehorn in during my already jam-packed week. Plus, like adairpete said, why should I spend my time talking to someone who most likely has no clue what it’s personally like to deal with a chronic illness, especially one with no freaking end like ESRD.
What do I need? I genuinely need help. Help with the basic stuff – laundry, cleaning, yardwork etc. I get “depressed” when I realize that my life is a treadmill – work, dialysis, sleep – lather, rinse and repeat. So the little bits of time that I have that aren’t taken with those items are given to trying to get some fun out of life. But then the household basics are thrown by the wayside until things get so bad that there isn’t any hope any more.
Friends and family just don’t get it – they think that since I go to work every day and manage to show up for command performances (dinners, parties etc.) that must mean that all is hunky dory. It’s not and they just can’t understand why I just don’t do everything.
I don’t need a therapist – I need a pro bono cleaning service and a stiff drink and family and friends that might actually give a damn.
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I have sought professional help. Two years ago, I started seeing a counsellor, but then my mom got sick and then passed away, and her estate STILL isn't closed, and my life has been pretty hellish since then. I haven't had the chance nor the energy to make another appointment. I am in two minds about whether or not to do so.
As of now, I don't have a packed life a la cattlekid, so I can manage my home and garden, but not much else. I don't have family or friends around to help me in any way, and I haven't done for many years, so I'm used to people not giving a damn. That doesn't bother me. Contrary to Momo, I zero in on the minutae of life so that I am distracted from the big, evil things. I guess I am wired in such a way that medical professionals do not intimidate me, so I don't have a problem there.
I do have a problem with fear of the future, with pessimism and with dealing with the fact that something horrible and never-ending has happened to me. When my son was diagnosed with autism, I felt the same way, that this was going to be a life long problem that would never be "solved", and so ESRD has hit me particularly hard simply because it feels like deja vu all over again. I've become shellshocked and live life just waiting for the next catastrophe. That has robbed me of the ability to enjoy today and to look forward to tomorrow. I know that my situation is unfortunate, but I am having real problems accepting it and in facing the fact that I am sick. I've just never seen myself as sick, EVER, but my labs tell me differently, and to realize that I am now one of those pitiful victims of horrible bad luck just makes me so very, very angry. So yes, I have issues.
I personally think that any doctor who might at some time have to give a bad diagnosis should have on hand at the very least a list of therapists or mental health experts who can help people with chronic, incurable diseases. I think that this sort of mental health work should be a specialty, that therapists could specialize in the treatment of the chonically ill and their families. There are specialists in divorce or in adolescents with ADHD or other issues, but again, nothing for us.
I, too, have difficulty in talking to therapists who have no idea what this is like. Unfortunately, I get snobbish and rate their creditentials as invalid. If you aren't in my shoes, then don't talk to me. But my issues are more global than that. There are many people who Fate has laughed at and then has bashed about. Maybe one person lost a child. Maybe another was raped or attacked. Many people have had things happen to them for no reason whatsoever, just like me, and some of those people might, like me, feel such rage and resentment.
Cattlekid, when my mother passed away, she left everything she had to me, and she did so because she, too, had been on dialysis and she, too, knew how hard it was to take care of the house AND be on dialysis. And my mother was much more of a stickler for a clean house than me. So, she told me to use the money to hire a cleaning service if I needed to, and I intend to do just that. If I were you, at every holiday or every birthday, I'd tell your friends and family that all you want is for them to organize a cleaning service, even if it is just for one day. At least then you'd have a clean house to start from. But they are not going to know unless you tell them.
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I don’t need a therapist. That’s just one more appointment I would have to shoehorn in during my already jam-packed week. Plus, like adairpete said, why should I spend my time talking to someone who most likely has no clue what it’s personally like to deal with a chronic illness, especially one with no freaking end like ESRD.
What do I need? I genuinely need help. Help with the basic stuff – laundry, cleaning, yardwork etc. I get “depressed” when I realize that my life is a treadmill – work, dialysis, sleep – lather, rinse and repeat. So the little bits of time that I have that aren’t taken with those items are given to trying to get some fun out of life. But then the household basics are thrown by the wayside until things get so bad that there isn’t any hope any more.
Friends and family just don’t get it – they think that since I go to work every day and manage to show up for command performances (dinners, parties etc.) that must mean that all is hunky dory. It’s not and they just can’t understand why I just don’t do everything.
I don’t need a therapist – I need a pro bono cleaning service and a stiff drink and family and friends that might actually give a damn.
Man, True Dat, I should have waited for you and adair to post and just done a :bump;
Though, I HAVE benefited from a therapist in the past, and if I had the time and money, if it wasn't such a huge additional stress, I would be all about it (with the right therapist).
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Hello Diane
Please keep us posted on your first visit to the psychiatrist today. I hope it will be all that you wish for.
I have recently tried to find a psychiatrist to talk about my sense of hopelessness, but I couldn't find anyone in this area who would accept Medicare.
I am also pretty disappointed in social workers. I did talk to a therapist a while ago but didn't find it helpful. As adairpete says, they don't really know what I'm going through, and they can't change the things that make dialysis so hard to handle for me. In my experience, if I tried a therapist again, they would tell me that I need to change my attitude towards dialysis. That's about all they can do, talk.
I also hate the general attitude of my dialysis providers that I should be grateful I am "allowed" to do dialysis and that I am "allowed" to live thanks to their marvellous services. They do not want to deal with my feelings of being trapped and my lack of control over my life. They have no idea how scary it is. I have recently had reason to contact my state Network for help, and I can tell you not only were they absolutely useless, they also made me feel worse because they have no compassion or even a clue what it means to be on dialysis.
My thought is - every dialysis unit should have a patient advocate who is also a dialysis patient. Ideally, these advocates should also have a little bit of cloud to address quality of life issues that dialysis patients find overwhelming. At least this would be a person who would understand and be accepting of our feelings.
Until then, there is only one remedy that truly helps me if only temporarily - Xanax.
Diane, a while ago you posted a thread about being forced to switch from the Baxter to the Liberty cycler, which really broke me heart. Since I am now pretty much in the same situation (see separate thread The New Baxter cycler doesn't work for me), can you tell me how you coped and how this is working out for you now?? Yes, I'm asking for a bit of "peer therapy."
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I think all of us should have access to therapists and antidepressants. I think being on dialysis is VERY stressful. Also I think the toxins that build up in us make it harder for us to think clearly and have perspective.
I have a wonderful therapist. She charges me on a sliding scale which most will do if you ask. The less you earn the less you pay. And you don't have to go every week
Now for the issue of whether they understand. You need to find someone you are comfortable with. That may mean talking to more than one therapist, kind of interviewing them. When I first started with mine, I was on my first transplant. Now of course she has never had a transplant. But with a good therapist, they know how to help you even if they haven't experienced it. She never once told me to be grateful for dialysis. It's more about figuring out how you can best cope with the problems you have. It should be very personal. The solutions for me may not apply to you.
I can't even express how wonderful it feels to have someone listening only to you and focusing only on you for that hour.
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National Suicide Hotlines:
1-800-SUICIDE
1-800-273-TALK
from http://suicidehotlines.com/national.html
If you feel like you are in danger of hurting yourself, call an ambulance or have a friend or relative take you to the emergency room.
I have taken a friend before, and it was ok, I didn't think less of her or anything, we still are great friends, and I was just glad to be able to help when needed. She is very happy now, was going through a very hard time. Don't be afraid to ask for help!
It's a permanent solution to a temporary problem. Please remember that.
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Thanks all for your insights into yourselves and our disease where the issue of therapy is concerned. I am fortunate that my insurance will cover my therapy for awhile and that I have found a therapist who specializes in patients with illnesses - I don't know her personal history yet. Today was OK, a good start, I think. I will see her again next Monday. I asked her what she thought she could do for me and she said, among other things, allow me to grieve my many losses (career, hearing, kidneys, breasts, etc) and try to help me find my future. Well, I'm all for both of those goals, so we will see. I also a quite sure that, were I still in in-center hemo dialysis I would be right where a lot of you are, that is not wanting one more appointment filling up my life! I had not thought of that before.
@purgatory - well, I'm sorry to say that my forced switch from my beloved Baxter Cycler to the Fresenius Liberty set off a chain of unfortunate events. After three nights on the Liberty I got peritonitis which led to 4 bouts of peritonitis (as soon as I finished the 21 day antibiotics I got sick again!) This lead to the loss of my PD cath and 7 months on in-center hemodialysis. Those 7 months coincided with my cancer diagnosis and treatment. What a hellish time that all was. When I went back to PD last December I refused to use the Liberty which was my only cycler choice, so I did manual exchanges until I got my transplant in Jan. I sure hope you have a better time with your switch and that things settle down for you!
:flower; :flower; :flower;
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I see a therapist weeky, it has really helped me I just had so many things to deal with all at once it became so overwhelming. It was like everything hit me all at once I was dx with diabetes, then heart issues then had a heart attack then ESRF, then my youngest was dx with a mood disorder on top of her ADHD and it sort of sent me over the edge, but for me therapy has really helped, again thats just me. Do what is best for you,
good luck
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Yeah I've noticed a depressed mood on the board lately as well. I mean some of the discussions have me wondering to myself if I would be better of with cancer!! But then I get back to reality and realize that both ESRD and cancer are bad, and I don't want either.
I went to a therapist several years ago. I didn't really find it helpful for some of the same reasons stated above. Sometimes I think I should try it again though, because I do get sad and depressed often. It is hard to be hopeful when your future consists of dialysis and/or transplant. and the knowledge that your transplant has certain side effects, and that the transplant may not last all that long can be depressing itself.
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I never thought I would go to a therapist, but because I missed a dialysis in April, a new doctor has ordered a visit to the psychiatrist. I am lying low and hoping it would all go away. I don't think my missing wasa mental thing. I just thought (incorrectly) that I would have been able to get through.
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Just the social worker that comes into dialysis. I feel comfortable talking with her about things bothering me. But, I don't 'see' a therapist. Like someone else said here, that would be one more appointment. Plus, I also don't have the money for a therapist either.
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I think that access to therapy should be part of the ESRD bundle. Keyword...."access", NOT mandatory therapy. But I know that will never happen.
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I did talk to the social workers in our unit way back when I was first on D...one was useless, the other a gem. I talked with the latter and had nothing to do with the other...I was lucky to have had that choice. I think it a real shame that there is so little understanding of the absolute NEED for good social workers who can provide good therapy for ESRD patients...here in Canada they don't have to do all the paper pushing tasks that keep them so busy in the US but of course budget cutbacks leave them with far too many patients to cope with adequately. A good therapist can be a social worker, psychologist, psychiatrist and these "trained professionals" can also be very poor therapist...it's the relationship plus training that counts.
I find it helpful and even essential to talk things over with a trained person who can listen and try to understand how distressing this whole thing is without trying to cheer us up or jolly us along when sometimes what we need to do is cry, complain, feel sorry for ourselves, get pissed off, whatever it might be before we gather ourselves together and get back to the grind that is often the life we live. A safe place with an empathic person who will listen to us face our deepest fears and anger and worry is what makes for good therapy and can really help to ease the burden even if just a little bit.
:grouphug;
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I was feeling rather fragile today, and on top of everything else, I had a dental appt. It was just for a regular cleaning, but I resented having to spend the time.
Well, the hygenist was very nice, but OMG she told me that she was having a hard time dealing with stress lately because she has four daughters and one of them was having to move back in along with hubby and children and another daughter had just left to go to Amsterdam to study for a year and had been really nervous because she had never been on a plane for that many hours and then her youngest daughter was living with her father (hygenist's ex) downstate and had been having emotional issues since age 9 and how she herself wasn't a religious person and had never been to church but that she tells everyone that they need to leave things to God and not stress so much but that her husband had pointed out that even though she is the most religious person he knows, she should follow her own advice but it is hard not to worry with all of her kids keep calling her with their every little problem and texting her with constant updates on what they are doing.
I swear I should teach a class in "Comparative Suffering" because I just couldn't find it in myself to commiserate. :P So I just told her that I knew a lot of people who have to live each day with so much physical suffering along with emotional anxiety because they have an incurable disease and do you have any idea what happens to your body when your kidneys fail like, did you know that you stop urinating and can you imagine how you would feel if you could not go to the bathroom for two days straight and do you know what happens to all of that fluid, well, I'll tell you that it can back up into your lungs and your heart and did you know that your kidneys also control the hormone that signals your body to make more red blood cells and when THAT gets screwed up you become anemic, so yes I understand what it is like to feel constantly stressed and as for letting God take care of things, well, He pretty much put me here in the first place and I am not sure He is going to choose to show me any mercy.
Let's just say I left her speechless.
:P
After all that, I really need a therapist. LOL!
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I find it helpful and even essential to talk things over with a trained person who can listen and try to understand how distressing this whole thing is without trying to cheer us up or jolly us along when sometimes what we need to do is cry, complain, feel sorry for ourselves, get pissed off, whatever it might be before we gather ourselves together and get back to the grind that is often the life we live. A safe place with an empathic person who will listen to us face our deepest fears and anger and worry is what makes for good therapy and can really help to ease the burden even if just a little bit.
:grouphug;
I think these are very important points.
I don't think I am feeling anything that is abnormal for someone in my position, and I have not read anything here that makes me think that one of you is either crazy or totally unjustified in what you're feeling. We all have different ways of coping; we are all wired differently. For every ESRD patient who is sanguine and determined to accept the hand they've been dealt with equanimity and even joy, there will be another patient who rages against the machine and has every reason to do so. The problem isn't so much the rage itself, rather, it is what to do with it, where to put it, where to hang it, how to stash it away for as long as possible. The only thing that will really ease my mind is a cure, but that's not gonna happen, so I have to take this resentment and find a way to leave it behind for longer and longer periods of time. And maybe THAT is where a good therapist can be of help.
I do think, for me, it is important for my therapist to at least have some working knowledge of ESRD because I think she needs to understand the genesis of my feelings. So, I spent a fair amount of time telling her what happens to the body when the kidneys fail. I needed to feel that she understood at least that much because I needed her to know that I have every reason to be resentful and angry. But once it is acknowledged that my feelings are valid, then what? THAT's what I have to work on.
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I have recently tried to find a psychiatrist to talk about my sense of hopelessness, but I couldn't find anyone in this area who would accept Medicare.
My SO and I see a therapist together, once a week. We basically talk about his illness and how it impacts the household, but for the year+ we've been going, she has been encouraging my SO to get individual therapy. He's on Medicare only, and well, nobody around here except the center for our area takes it, and they have a month or greater wait list and from what I've heard, sort of disorganized.
I personally think psychotherapy is a good thing, whether you feel you have a reason to go or not. I started pre transplant, and continued after just because it was good to have someone to sound things off of when it came to work stress, family stress etc. But a good support system, this site included, is probably just as important as one on one talk if not moreso.
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I choose to have weekly appointments with a person from Stephan's Ministry. They are affiliated with a church, but they are not there to preach, convert or condemn. They are there to listen, listen some more and maybe suggest. It was nice to have a place to dump all my problems and then walk away. But, after about a year, I realized that I was listening to her situation with her siblings, her housing, her struggles. I do like to help others and I know I am quick to want to fix things for others, but this back fired on me and I had to stop going. I was worrying about her too much!
This site has been my safe zone. Any life threatening disease will bring worry and some type of depression. I think each of us has a right to rant from time to time. I am a "glass half full" person. At the same time I was diagnosed, my sister in law found she had stage 4 breast cancer. She died from it. Both our mothers had died the year before. There was no time to mourn my health lose and really, when you watch someone die and you aren't, it puts things in prospective. My 5 yr old niece was diagnosed with type 1 diabetes. Again, it put my life in prospective. She has to live with this forever and we all know she will have complications in the future. I have had a fun life, did most of what I wanted and raised my kids. And I have always been ok with death. But, I can come to tears about not being here for the grandkids future, so I make memories with them now.
Leaning on all of you is the best way I have to express my concerns. Any therapist would have to be someone trained in patients with potentially deadly diseases to even begin to understand what we are going through. I already saw a therapist in my young adulthood for the traumas in my childhood. I don't want to start from the beginning again! And I hate the phrase "it is going to hurt a lot more before it ever gets better". Never mind! This hurt is bad enough --- I don't need to dredge up old stuff - just listen and don't try to fix me.
Oh, would I love a cleaning service just once every two weeks! Others don't see the baseboards need cleaning or the ceiling fan blades need dusting, so I climb up to clean them or get on my knees to scrub in corners. And then I sit on the floor wondering how am I going to get up? :rofl; :rofl; Oh what a life!! :rofl; Thanks for listening! :grouphug;
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I see a therapist regularly for chronic depression. i was already seeing her when I was diagnosed with CKD so it was just natural to start talking about how all this has affected me. I find it helps to have a place to go where I can say anything and not be judged or told my fears, feelings and anxiety are not vallid. Sort of like coming here but with immediate verbal feedback. I think you have to have a therapist that 'fits'. Sandy is not the first therapist i saw, it took awhile to find someone I was really comfortable talking to about the really personal aspects of my life. And lets face it, if you're not going to be open and honest you might as well just set fire to your money.
MJ
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I was thinking about this the other day really. That the services are just inadequate. My social worker is a nice lady but just don't feel comfortable talking to her about anything. I probably confide a lot more in my nurse and my tech than I should as a result. I spend so much time with them that I've gotten really comfortable talking to them. Sometimes they seem interested and they seem to care and sometimes I think they're just going through the motions to do their jobs. It's definitely difficult to find someone you can talk to about the things you feel and experience and whatever. For me I think I probably withdraw from people because I don't feel they understand. It probably makes me moody at times. It sucks... what are you gonna do...
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I am beginning to think that for me, therapy might be a good idea. IHD has helped me tremendously, but I don't feel 100% safe 100% of the time posting here because I am always mindful of the fact that most of us don't really know each other that well and are not able to even SEE each other while we post. So much of human communication is non-verbal, and we can miss a lot of nuance when we communicate solely over the internet. The risk of saying something that might upset someone is high. And let's face it...we are all rather more fragile than most people. I don't want to complain about, say, a cardiac stress test because for all I know, another IHD member might have that same test scheduled for tomorrow, and my post might freak them out.
So, my plan is this. If I need some TLC, I will go to my husband. If I need to talk to someone who really understands, I will come to IHD. But if I need to lance the ugliest of boils, I think I will go to someone who has professional training in dealing with ugly boils.
We may "understand", but we are not professionally trained to help fragile people through dark times. That would be too big of a responsibility. Remember the thread recently from a poster who wanted to know what it was like to die from stopping dialysis? Loads of us chimed in, offering what we thought was help, only to get embroiled in a debate on what was helpful and what was not. That was a scary discussion, and I don't want to go there again.
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Really glad we are having this discussion. I have so much respect for you all and knowing we all "get" it makes your sharing even more meaningful to me. You make so many good points. We each have our our journey and have to do what is right for ourselves. Therapy is another option of something that may help some of us get through.
I'm inspired to do some leg work and try to find out if cleaning companies would even consider offering free services to dialysis patients. What a blessing that would be, wouldn't it? Real hands on help, free of charge. I know I'm dreaming here and I've slid right off the topic, but that's one thing I'm thinking about.
Several of you make a good point that we are not qualified to help a severely depressed, potentially suicidal person, on this message board. There have been many threads over the years that I've been here that made me really uncomfortable. I mean if the poster is looking for empathy and understanding and even life experiences, we are the place. But sometimes I fear they are looking for much more and I fear our "I can relate" responses only prove to support their end of life thinking.... I think we wade in dangerous waters sometimes...
Anyway. You all have me thinking!
:flower; :flower; :flower;
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I swear I should teach a class in "Comparative Suffering" because I just couldn't find it in myself to commiserate. :P So I just told her that I knew a lot of people who have to live each day with so much physical suffering along with emotional anxiety because they have an incurable disease and do you have any idea what happens to your body when your kidneys fail like, did you know that you stop urinating and can you imagine how you would feel if you could not go to the bathroom for two days straight and do you know what happens to all of that fluid, well, I'll tell you that it can back up into your lungs and your heart and did you know that your kidneys also control the hormone that signals your body to make more red blood cells and when THAT gets screwed up you become anemic, so yes I understand what it is like to feel constantly stressed and as for letting God take care of things, well, He pretty much put me here in the first place and I am not sure He is going to choose to show me any mercy.
Let's just say I left her speechless.
:P
After all that, I really need a therapist. LOL!
Yikes! I bet she won't confide in you again, LOL! Mission accomplished! :beer1;
I understand not being able to handle other people's seemingly petty stuff while you are especially fragile or having a tough time. While my dad was dying, I had to stop talking to a friend who constantly complained about her divorce and our friends' (in her opinion) inadequate response. I didn't have the strength to listen to how much she hated all of our mutual friends, and how she planned to burn her ex.....it was too negative. She totally deserved a good shoulder, but I knew she had others, so I just said, I'm sorry, I have a lot going on and am not really available right now. I wanted to be there for her, but it became too much, and I really stopped talking to everyone for a while, because simply didn't have time.
Your story reminds me of something that a counselor told me once. She had had a benign brain tumor, a very scary experience. She told me how angry and upset and frightened she was (I forget why, but it was relevant to my situation). I told her I felt silly talking to her about my dumb ex-boyfriend and (at the time) relatively minor health problems. She told me, my broken leg doesn't make her sprained ankle hurt any less (to paraphrase).
Everyone has their own problems, and while of course we have bad days and might be impatient or dismissive, we should definitely try to listen and help. I think it makes me feel better to help, though I have TOTALLY had days where I dropped the dead dad or kidney card when someone was being ridiculous. I just try not to, cause I feel bad about it later and remember that just because they aren't dying or chronically I'll, doesn't mean they are not suffering. And when someone is being a total pain, or insensitive, I try not to take it personally, because as my 12th-grade English teacher said, "Be gentle with others, they are the walking wounded.". Sometimes you don't know what other people have on their plate, as we've all experienced, not "looking sick" and all...
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Momo, excellent post. As I said earlier, I am a glass half full so, I always assume that anyone I am talking to may have a much harder life than I do. For instance, my husband and I had to fill out health forms and it asked how you felt your health was. My husband checked "poor" and I checked "good". He has diabetes, very well controlled. Same level of meds for the past 5 years. But I think my health is good even with a transplant, fibro, arthritis and degenerative bone disease and a few minor things!
Going back to a therapist - I do believe in therapists, but I think your outlook on life greatly effects what your results will be with a therapist. If you already think your lot in life is the worst, you may never see the good in it. I also think it is normal to go through periods of depression. And I feel we can do some good for each other on this site, even if we aren't face to face. We can't diagnose, but we can give support and lend an ear.
Interesting responses. WishIKnew ---- we need a "wish maker" for adults with our type of diseases! Surely, Merry Maids, or one of the big cleaning company could randomly give cleaning service in their area pro bono. Starting with you! If we didn't have to do the heavy cleaning, it would help us so much. Pick me!!!! :2thumbsup;
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Momo, the hygenist wasn't confiding in me. At least, not at first. She was just rambling and telling me incredibly personal things about her family before I had even sat down, and she had never met me before. She was no good at self-editing.
I don't know what it is about that place, but the last hygenist I had did exactly the same thing. I'd never met her, but she immediately launched into a verbal novel about her kids, complaining about them while at the same time telling me how great they are. Funnily enough, the conversation turned to a point where I found myself telling her exactly what you've told me, that we never know what battles someone else is fighting (she had been complaining about someone who had been rude to her). She stopped, sat back, and said, "That's a really good point. I need to remember that. Thank you." I really hope I had given her something that might make her days a bit easier.
As for this hygenist, well, on this particular occasion, I was feeling really unwell, and I had told her so, but she just kept talking. Maybe she was nervous or thought I was nervous and was trying to put me at ease. To be honest, I am uncomfortable with hearing about other people's children because they inevitably ask me about mine, and I don't lie really well, so I answer them honestly, that he is autistic and is living abroad and that yes, it DOES hurt a lot. So after hearing about all of the wonderful accomplishments of their kids, I am reminded that for my son, life is a struggle and he is struggling without me there, and my biggest nightmare is for me to be stuck on dialysis and something happens to him and I can't get to him in time because I'm stuck to a machine.
But do not be concerned. I listened to her carefully and even tried to offer something, even though her fingers were stuck in my mouth. I told her that while texting and emails are wonderful tools, the result is that sometimes the people in our lives forget to figure things out on their own. Instead, they text mom with every little concern and worry. I smiled and commiserated and just went off on the kidney thing because she had mentioned that her daughter had depression so bad that she had been talking about suicide since she was 9 years old. I told her that it was just so unfair that kids that young found life so difficult, and that's when I shared the fact that I knew some young people who had had kidney disease all their lives and would have it forever, so I understood how these chronic conditions are particularly hard on the young. Remember, I had never met this woman, yet she tells me this information about her daughter. I confess to being rather taken aback. That was very personal information.
I am EXTREMELY well aware that everyone has their battles to fight. I am the one who tells my husband, when someone cuts him off in traffic, that maybe that person is racing to pick up his wife at dialysis...you never know. I happen to have an ego the size of a baby gnat, and I practically NEVER take things "personally". As for this hygenist, she knows exactly what is causing her stress and she knows exactly how to combat it, and I told her so, but I also told her that when you are a mom, the desire to fix everything for our kids can be a sorce of stress in and of itself, and for her own sanity, she might want to think about dialing it back. She agreed.
So, I listened, I sympathized and I offered suggestions just so that she would know that I was listening. But then she started complaining about insurance and other related topics, and that's when I told her about how dialysis is funded and how even if you have insurance, they kick you off onto Medicare after 30 months because you no longer are profitable. (She had finished the cleaning, and we were waiting for the doctor to come in. He was busy with a patient, so we had all of this empty time in which to talk.) I told her how uncomfortable this made me as I don't want the American taxpayer to have to pay for my treatments...I have insurance for that, but I won't be allowed to use it. But do you think she was listening? No. She had told her story and was not interested in mine. I gave her a listening ear and a metaphorical cup of tea, but she did not offer the same to me. I knew that she was fighting her battle with stress, but she was not interested in my war.
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No! When i'm done with "D" - I am done for the day. I don't even think about it when I have gotten off my "leash".
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WishIKnew, thank you so much for your reply on the Liberty cycler. I will do manuals before I use that contraption, ever. I started at a new dialysis center yesterday (oh, the stress) but they seem much nicer and more interested in treating me as a person, so I have some hope they will help me sort our my cycler issue.
MooseMom - your posts are wonderful. They express so much of my own feelings. My husband is always my go-to person when I feel down. Without his broad shoulders and endless patience, I would be lost.
I came across a really good saying the other day: "Only he who carries the load knows its true weight." It helps me a lot to know that many of you on IHD express the same feelings about ESRD and D that I have (rage, grief, depression, hopelessness, etc.) and that these feelings are a normal response to our situation.
Thank you all
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Ugh, sounds like she was a psychic vampire. I read about them in the weekly world news. :rofl;
You did your best, girlie, you did your best. I'm glad you spoke up and told her trousers't feeling well, and it is too bad that her edit button and sensitivity chip were malfunctioning. Maybe she had ADHD, like me! We can seem super compassionate, then aloof goofs the next moment. We also tensor babble.
I've noticed those people who vomit up tons of information often don't reciprocate when it's your turn to share ???. I try not to do the same. Sorry if I misread the situation, sounds rough. Hopefully things are going better for her, and you!
:flower;
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Oh, I survived. It was no big deal, but it amused me somewhat. She must have been really stressed out for her to spill such personal information, and in thinking more about it, maybe she felt safe venting to me, someone she'll probably never see again. That's just fine. :2thumbsup;
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As a mental health professional (well I used to be a case manager for the mentally ill), I found it sooo difficult to go to therapy... cause I know exactly what they are going to ask, and what they want to hear... I agree with all of the posts on here too... why go to someone who doesn't know what you're going through...in terms of medical issues?
I saw a therapist about 6 months ago...she was VERY VERY NICE.. but when I told her about my ESRD, and D she looked at me as though she was the one who needed therapy! I get bored with therapy too... It's the same no matter who you go to;
"Tell me...how does that impact your daily routines?" "Tell me... how does your family help you?" "Tell me...blah blah blah" I don't need someone to tell me I'm depressed... I know it and that's why I'm so glad I found this site. I think at times, some of us forget there are others out here that are going through the same problems... what helps me is knowing that. :cuddle;
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I tried therapy once. I remember walking out of there saying i want that hour back, since it was a waste of time. I found the therapist fake.
Right now when i get depressed i think of positive things in my life, things i'm proud that i have accomplished. I also go and work out to get the happy hormones traveling in my body.
i find it works well and most days I'm okay with having ESRD and being at dialysis at a young age. Ialso make plans to look forward too, seeing friends or going on a trip.
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I find that my hour a week with the therapist is very helpful. But, I also see very clearly that my issues that lead to my great depression were far more than ESRD. I've lost so much in the past several years: my hearing, my career and identity, my confidence in social situations, my kidney function, my independence, my energy, my son's childhood, my financial security (filed bankruptcy), my home (foreclosure), my breasts (cancer), my self-esteem, my trust that I will have a future at all.... So, I believe that before I can take my wonderful new kidney and seek a future, I need to grieve the losses and build up the person who will emerge from the flames. She is helping me to do that. Mainly she listens, does not judge, and gives me a place to feel however I feel without dumping it all of my husband or friends. It's not their job to catch all the shit I throw! LOL So, for me, it seems to be helping so far.
I'm also working out almost every day at the gym which is very empowering. And I'm taking an advance Sign Language class, which I LOVE and I believe will be key in finding my future. These things in tandem seem to be pulling me up, one day at a time.
Everyone finds their own ways of coping. I support whatever works! :2thumbsup;
:flower; :flower; :flower;
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You really are amazing WishIKnew. :beer1; :bow;
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Oh, WishIKnew, that's a tough string of troubles, and I'm glad that you have found someone helpful. You're totally right to work at getting into a better headspace/emotional place ahead of getting a transplant. :grouphug; :cuddle;
Rain, there have been times when I've thought that a psychologist or social worker was fake, and have wanted my hour back, but there have been other times when I really had a good person and needed that help, and looked forward to the sessions, to unpacking the problems I was having and learning how to cope well. A lot of them seem fake, though.
I think many of us have simply had poor experiences, or were somehow forced to go when we weren't ready, or guilted into going, perhaps, and therefore couldn't see the benefit. If you haven't found the right person, keep trying. I think that except in extreme cases where there isn't a choice, it is best when the patient chooses to go, and feels able to choose their provider and psychotherapeutic method. There are differnet methods, just like with anything else, we are not all one size fits all. It is really hard to dump a physician, though, not saying it's easy to find a new one, especially in the same health system, ugh. Like dating one of your ex's friends....but sometimes you just don't have a good fit with a doctor and have to switch. It doesn't mean that the whole profession of psychology is useless, just that you weren't with the right person, or the proper method for your needs.
Just my :twocents;
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It may be a bit too late to jump into this conversation but I could not resist belatedly sticking my nose in. (must be the social worker in me!) I've often pondered the whole sw/patient dynamic during the years I've been in this job- how can I best serve the patients, and not just be (or be seen as) a paper pusher. On the one hand, the majority of the patients, when they first begin, are too shellshocked (and often too uremic) to benefit from more than the most basic help- making sure they have nothing to worry about as far as getting here, social support, insurance. After the initial adjustment period it often seems patients have a hard time viewing me as more than the person who takes care of pesky insurance bills, or who helps them apply for benefits, or who rolls out the Bingo cart once a month (honestly some patients only appreciate my bingo calling skills!). Overall, everyone is different in what they need and expect from me. I've come to decide that, for the majority of my patients, working to ensure that they can experience a bit of normalcy in their lives seems to be most therapeutic. All the social workers in your centers, believe it or not, are qualified to provide some sort of therapy to you (whether "psychotherapy" specifically is up to whatever branch of therapy they choose to practice- we are all qualified to do something, but honestly the push these days (or at least when I was in grad school, which admittedly was a while ago) is for more results oriented therapy. That's the kind that insurance pays for and honestly, although psychotherapy can be cathartic, clinical studies tend to side with quicker solution-focused/behavior-modifying modes of therapy.) Even if you don't have a close relationship with your social worker, please ask about counseling. Even if you don't want counseling from your social worker, he or she will be able to make a referral somewhere for you. I am glad to provide counseling for my patients, although I do not take it personally when my patients ask for counseling from someone other than me. I personally would find it a little unsettling to see my therapist three days a week! ("Hmmm..sure wish I hadn't have shared those homicidal thoughts!!" Just kidding...) The dialysis clinic just is not conducive to a good therapy session. I share an office with the dietician, our office is right off the lobby- so much for privacy. In some ways I wish CMS mandated that every clinic had a social work ASSISTANT to deal with the paperwork and bingo, and an MSW that came several times a month for scheduled, private therapy sessions. But then again, I kinda like being helpful with the little things, because I think most patients here appreciate that more than the credentials behind my name.
Anyway, long story short. Take advantage of your social worker. Free therapy. Also consider approaching your social worker about starting group therapy at your clinic. My experience with groups has not been great, usually only a couple of people show up and only talk about diet-related stuff. However, groups that are patient-run and patient-driven are proven to be very powerful.
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Ive seen a therapist because I have a really bad temper....
And it is true that it is another appointment. I try to go once a week and would like to so that is reason why i do not work.
Therapy does not always work for me. I saw a therapist recently. And he was missing a hand, born without a hand. And basically told me if God wont give me a hand why would he give me a kidney? If God can move mountains why hasnt he given me a kidney?
That made me feel worse then I already do.
Lisa
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Because I want a week's vacation, I found out that I have a social worker at my center. I've seen her flitting about, but had never talked to her. While she wears the white plastic coat, she also wears high heels, which seemed odd to me until I learned she's a social worker, not a health care provider.
Anyway, they are useful for things like vacation scheduling, answering questions about insurance, and the like. Seeing her for counseling, however, makes little sense. She's been around long enough to know that until and unless we patients get transplants, we're not going to get better. What, really, can she say? "You'll get used to it"? "Most patients adapt over time"? If she had any other viewpoint, I'd think she was nuttier than I am.
Never been to a psychiatrist or psychologist, so I have no valuable opinion on whether they might help. However, psychiatrists can prescribe drugs. Just what I need, another pill to take!