I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Restorer on March 31, 2010, 02:17:33 PM
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Hi everyone. It's been a long time since I've posted here.
How do you deal with family members who want to know everything, but you don't feel like talking about it with them?
I had a whole rant written here, but it was rambling and ill-composed and I couldn't figure out how to get my point across. So I'll just summarize: I don't want to have to tell my dad, at the random organized dinners or whatever, how I'm doing, or why I'm not doing well, or what's going wrong with my health at the moment. I also feel guilty telling him that I don't want to talk about it - it's just not something that's ever done in my family.
How do I get it across that "I'm only here because you made it sound like an obligation, and I haven't been feeling physically good in weeks, and I don't want you asking about it." If I had to say it that way, I'd end up breaking down halfway through because I hate talking about things like that.
Okay, trying not to rant again. Let me know your thoughts.
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Hi Restorer, nice to see you here again although I sort of hesitate to ask how things are going with you, given the subject of your post. That's obviously supposed to be a bit of a "joke" but on in a more serious vein I'll respond to your question.
All families are different and I think they're almost a little like countries or cities in that each may have its own culture and customs, language and rules.
I'm not sure how come you don't want to talk to your Dad about how you're doing except that you say that it's not something that's ever done in your family. Is having kidney disease something that's been "done" in your family or are you a pioneer. If your Dad is asking, is it because he cares, because he'd like to help or why is it that you consider this nosy? I can totally understand not wanting to get into everything during a random dinner but what about having a real talk with your Dad, about it all...it's not complaining or gossiping or whatever, it's being real about something very upsetting and life altering that you're going through and with which (if you're anything like most of us) you could use a bit of help and support...understanding at the very least. From your post it sounds as though there's some emotional distance between you and your Dad but I don't think you should feel guilty about choosing when to be honest about yourself and I also don't see it as nosy to want to know how a close family member if feeling and coping. I also don't think you should feel obliged to attend a function if it's too physically draining at a given time but you might want to at least explain your reason, which comes back to talking about your illness. There's no shame in the many intense feelings we go through around this disease and one of the toughest things for me personally would to feel isolated and alone with it.
So, these are some of my thoughts on this subject and I'd also sincerely be interested in what particular things you're struggling with at the moment. Someone on here might have some thought or suggestions about that too. :grouphug;
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I'd like to ask about the "random organized dinners". If you did not have kidney disease, would these dinners be a pleasant way to spend an evening, or would they just be a real pain? If you'd otherwise like spending some time with your family, it might be an idea to have a quiet word with your dad beforehand, saying something along the lines of "I appreciate your interest, but thinking about my kidneys takes up too much of my time as it is, and I'd like to have time with all of you to get away from that particular aspect of my life, so please tell everyone that this topic is off limits." Then you could perhaps steer the conversation away from you and toward your other family members, keeping in mind that most people like talking about themselves.
But monrien is right in that kidney disease is difficult enough without adding the burden of carrying all of the load alone.
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Since you asked, I don't understand why you don't want family support. I am not looking for sympathy from my family, just want them to know whats going on. I do not talk to my family much, but I know they are there and support me.
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I think I understand what you're saying. When my family starts asking questions, it feels like they're prying into my personal life. Maybe I'm weird that way! They don't bug me about it anymore. I don't know what did the trick -- moving across country? Responding "I'm fine" to questions? I don't really have the answers, but can maybe offer some understanding.
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Maybe you could write you Dad a letter explaining that you have a hard time talking about what is going on with you. CKD is very complicated and is not cut and dry and nothing stays the same.
Just a thought.
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When you get to the family get-togethers, just tell your Dad your doing the best you can for someone with kidney disease and switch the subject. I have family members ask me this all the time. It's mostly because I do not see many of them except for special occasions (e.g. Easter), and they want to know how I've been doing. I keep it simple but honest, then switch the subject. Works every time. Most don't want to know the particulars anyway. As for my Father, I call him sometimes and provide him with the details he wants, because I know he really is interested, whereas others are just wanting a general response. Try it, and see if it works for you.
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Those are good suggestions, as for me, I don't mind, after all this is as new to them as it is to me.
Troy
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I guess I wrote a huge post. I responded to almost everything here, and maybe some of it makes sense, maybe some of it is just my messed-up brainbox.
I'm not sure how come you don't want to talk to your Dad about how you're doing except that you say that it's not something that's ever done in your family. Is having kidney disease something that's been "done" in your family or are you a pioneer. If your Dad is asking, is it because he cares, because he'd like to help or why is it that you consider this nosy?
I'm the first and only person in my family to have a major chronic disease. I suppose my dad is asking because he cares and maybe because he wants to know how to "color" the rest of the interaction based on my health and mood. It's not that I mind him asking, really, it's just that I don't want to get into describing all my problems. What's "not ever done" in my family is refusing to talk about something.
I can totally understand not wanting to get into everything during a random dinner but what about having a real talk with your Dad, about it all...it's not complaining or gossiping or whatever, it's being real about something very upsetting and life altering that you're going through and with which (if you're anything like most of us) you could use a bit of help and support...understanding at the very least. From your post it sounds as though there's some emotional distance between you and your Dad but I don't think you should feel guilty about choosing when to be honest about yourself and I also don't see it as nosy to want to know how a close family member if feeling and coping.
Mostly it's because I'm much better at communication through text and writing than through conversation. When I'm asked to explain something about myself, especially when there's some sort of hint that it's my fault, or it's something embarrassing, it makes me emotional trying to talk about it. If it's something oppositional, something that could be called a confrontation, saying what I really want to say usually ends up in tears, and embarrassment thereof.
I also don't think you should feel obliged to attend a function if it's too physically draining at a given time but you might want to at least explain your reason, which comes back to talking about your illness. There's no shame in the many intense feelings we go through around this disease and one of the toughest things for me personally would to feel isolated and alone with it.
I decided to reject the invitation with the excuse that I'm not feeling good, and I don't feel up to visiting, and especially dealing with the dogs. That's a big thing that makes visiting frustrating when I'm not in a good mood - tiny house, two huge dogs. I'd rather avoid getting drooled on and beat up by giant dogs, and having to protect my dinner from them.
I'd like to ask about the "random organized dinners". If you did not have kidney disease, would these dinners be a pleasant way to spend an evening, or would they just be a real pain? If you'd otherwise like spending some time with your family, it might be an idea to have a quiet word with your dad beforehand, saying something along the lines of "I appreciate your interest, but thinking about my kidneys takes up too much of my time as it is, and I'd like to have time with all of you to get away from that particular aspect of my life, so please tell everyone that this topic is off limits." Then you could perhaps steer the conversation away from you and toward your other family members, keeping in mind that most people like talking about themselves.
Normally (without health problems), I don't think I'd want to go for dinner, both for the dog reasons above, and other reasons, that now my kidney problems and dialysis have made worse. Those problems are mostly about school and insurance. My dad's the one pushing me to finish my degree, despite my health problems. Also, since my dad got laid-off, he has to pay extra through COBRA to keep me insured, and I have to stay a full-time student unless he applies to have me counted as a disabled dependent (which I don't even know if he can do - and he'd still have to pay through COBRA).
So he's always asking me about what I'm doing for school, which really hasn't changed, but my answers always seem to disappoint him. He wants me to hurry up and get my degree, and it's not like I haven't been trying, but problems keep getting in the way. I seem to have major problems (peritonitis, fluid overload, etc. etc.) once or twice a year, which put me completely out of commission for several weeks, and make it very hard for me to work or stay in school. He doesn't seem to understand that. The same deal goes for insurance - I'm not looking into what to do next about insurance, because he's not telling me what he's doing or not doing about it. Chances are, he'll stop paying for me without telling me, and they'll drop my coverage, and then I'm screwed.
The point is, there's rarely an opportunity for me to discuss this with him, especially since I just can't do it face-to-face, verbally. If I get an opportunity, I might finally write up a big email describing all my problems and frustrations, but to send an email like that out of the blue isn't something I really want to do if I don't have to.
Since you asked, I don't understand why you don't want family support. I am not looking for sympathy from my family, just want them to know whats going on. I do not talk to my family much, but I know they are there and support me.
I do want family support. I very much appreciate my mother's support, who I live with. She understands my dietary needs, and understands that basic practicalities of my dialysis. She understands that many times, I'm not physically up to even the relatively small amount of work I need to do to keep things in order, like disposing of all my PD trash. When I got peritonitis the day before we had to move everything out of the old house, she was fine with me sitting on the floor and essentially just supervising while she disassembled the bed and moved the furniture.
My dad is a bit of a different story. His attitude is that, with the right planning and enough thought, one man can do anything. He's remodeling his entire house himself. He rebuilt his roof himself. So my impression is that he thinks I'm just being lazy, or not paying attention to the issues I should be. He obviously doesn't take any of his time to investigate my situation on his own. Rather than learning about my diet, he asks at every meal, "Is that good for you, Matt?" "Are you okay eating that?" And so on. Sometimes it means I end up only being able to eat part of dinner, and nothing else (he lays out mixed nuts as a snack, or has ice cream or oatmeal-walnut cookies for dessert or whatever).
Yes, when I visit, it's not like there's much he can do different whether I'm feeling fine or not, or whether what he already has is fine for me to eat or not. It just feels like when he says, "We're going to have grilled salmon, and baked potatoes with feta, and grilled peppers. Is that good for you?" he's actually saying, "We made and agreed on these plans. Are we going to have to change our plans for you?" and I just don't have the courage to stand up and say, sarcastically, "Thanks for considering me from the start. I don't like salmon and I can't eat a big baked potato with feta, but go ahead and serve it because you've already defrosted the salmon and you don't have anything else to serve."
I think I understand what you're saying. When my family starts asking questions, it feels like they're prying into my personal life. Maybe I'm weird that way! They don't bug me about it anymore. I don't know what did the trick -- moving across country? Responding "I'm fine" to questions? I don't really have the answers, but can maybe offer some understanding.
Moving out of the same small suburb a month ago has already cut down on the visits. He used to come over almost every Tuesday night to see my brother, and then when I moved back home, me too. Which meant sitting on my brother's bed, next to my dad, for and hour and a half while he talks about his dogs and gives us dirty looks for not being as productive as he'd like us to be. Now that we're living farther away, it's cut down to just special occasions and the random dinner visits.
Maybe you could write you Dad a letter explaining that you have a hard time talking about what is going on with you. CKD is very complicated and is not cut and dry and nothing stays the same.
This I will do when it seems like a good time.
When you get to the family get-togethers, just tell your Dad your doing the best you can for someone with kidney disease and switch the subject. I have family members ask me this all the time. It's mostly because I do not see many of them except for special occasions (e.g. Easter), and they want to know how I've been doing. I keep it simple but honest, then switch the subject. Works every time. Most don't want to know the particulars anyway. As for my Father, I call him sometimes and provide him with the details he wants, because I know he really is interested, whereas others are just wanting a general response. Try it, and see if it works for you.
How do you propose I do this? I'm not good at verbal conversations. My mind doesn't run fast enough to think of the right responses, or spin questions to answers I want to give, or "change the subject" unless I'm typing (e.g. in a chat room). In actual verbal conversation, everything that comes out of my mouth is dumbed-down and riddled with awkward pauses, stuttering, and backtracking.
For example, he'll ask, "How are you doing?" That's a perfect opportunity for me to say, as you suggest, "I'm doing the best I can." He's not expecting an answer like that (he would be expecting something along the lines of, "I'm good" or "I'm doing fine" or even "Eh, not so good"), so then he asks me to elaborate, along the lines of, "Oh. Does that mean you're not doing so well?" And then I feel obligated to explain. Changing the subject isn't easy for me when there's no other subject going on to switch to.
The other opening is harder - "So, Matt, what did you say you were doing for school? Are you going to UCSB right now?" "No, I'm not. I'm going to apply for fall, probably after taking summer classes." And then to justify that, I have to explain what I did above, about getting sick for several weeks at a time. Even going back in the fall is a maybe, because of money problems, and I especially don't want to talk about that with him. He doesn't even know I'm on disability, because it's the kind of thing that he would think of as a failure condition.
I just think he's embarrassed of me because I'm not making anything of myself, whether it's my fault or not.
Well, that was a huge post. Took me over an hour to write it. :-\ Sorry for making it such a huge rant, but I guess those are all my thoughts on my father and my family.
:rant;
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That is what this site is for. Rant and get it out of your system for awhile. I hope you feel somewhat better or are at least exhausted and can sleep well tonight.
:flower;
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I am glad you took the hour to write this all out. My daughter and I are very close, but we still find writing is the best way to communicate our biggest feelings. Maybe the day will come when you can write it out for your Dad. (or just print out your post). Somedays I wish I had a hand out sheet when people ask "how are you?". Most really don't listen -- they just want to hear "I'm great". My standard answer is "I'm fine." I am not great at small talk, especially about myself. If I could just hand them a paper that said: I don't sleep, I throw up alot, I am tired, I hurt, etc, etc. It would shut them up! We have missed you here. Keep posting. And keep venting. We understand. :cuddle;
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What is already a rather difficult dynamic between you and your father is made more problematic by your renal disease. It's hard to deal with difficult people when you feel rotten. You may be right...he may be embarrassed by what he perceives to be a lazy offspring, but are you SURE that's what he thinks, or is that your assumption? He may be horrified if he knew you thought of him in that way. You have to entertain the thought that you might be wrong about that. Most people really have no earthly idea how to deal with someone with a chronic illness. I wouldn't be surprised if deep down inside, your dad might be feeling guilty that he can't "fix" you because most men like to fix things they think are broken. I wouldn't be surprised if the reason he doesn't know more about your situation is because he is afraid of what he might learn.
Do you think it is possible for your mother to speak to your dad on your behalf? The things you have posted here...does your mother know all of this? If so, could she run interference for you? Could she explain things to your dad so that you don't have to?
You are quite instructive when you write about your feelings. What do you think about writing a letter to your dad, but not necessarily posting it to him? Write everything down just like you did here, and more. Work on the letter for some time until it perfectly illustrates your situation and your feelings about it.. And then sit on it a while and see if you might consider giving it to him.
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Rertorer, that was a very clear and articulate post and it has helped me to better understand some of the family issues that you're dealing with...and they're tough ones for sure. I'm also not convinced that you aren't good at verbal communication...I know that YOU are convinced you aren't but it sounds as though it's particularly hard to talk to your Dad for the reasons that you so clearly outlined here. If talking is too difficult then you should put things in writing because you communicate well on paper if this post is any indication. The sensitivity to others feeling that things are your fault most likely comes from your history and all of us have similar struggles as we grow up and become independent.
I would love to see you find a good social worker to discuss some of these things with and to help you find a way to really help your Dad to understand what ESRD truly does to us...it does not make us lazy...it makes us sick and that affects almost every corner of our lives and our selves. A good third person to help your Dad come to grips with what is happening to you would be a great thing. The insurance discussion also sounds like a mine field but yet it's got to be faced. It sounds as though your Dad is choosing denial about the seriousness of dialysis and the effect on your body, instead of educating himself on things...people often think that "denial" means that people refuse to care or to face the facts but really it's just a not particularly good way of coping with tough stuff...it makes it easier to not feel super sad or perhaps helpless. Your Dad is "coping" in a way that many people do and it may in fact be working for him (a denied reality or a distorted reality can be hugely preferable to facing a painful one) but it sure isn't doing a thing for you.
Sending you some hugs and hoping that there's a decent social worker on your team who might be able to help with this situation. You certainly have my support.
:grouphug;
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You could try a different approach. Switch the conversation to hemorrhoids. The reason is that everyone over 40 suffers or has suffered from hemorrhoids. If they say they haven't, they're liars. Anyway, the point is that it's no longer you and your medical problems that is the subject of conversation; everyone present is.
If the conversation is over the dinner table, so much the better. Make it sufficiently gory and no one will want to to return to a similar subject again.
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I totally understand this- have you tried making your own blog on a website like caringbridge? On blogs like that, you can write what's going on when you feel like it, hand out the blog's address, and if your family asks direct them to your blog. Works wonders! :)
On a less serious note, faint- that happened to me once and no one bothered me for a while! Just kidding :rofl;
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I've never made my own blog that details my life on dialysis, but I've thought about it. It seems it would be a lot easier just to have family "stumble onto" my blog and suddenly know all about how I'm doing. The problem is keeping that blog separate from other things, and writing it specifically as if I knew my family were reading it. There are a lot of things I don't want my family to read from me - this thread would be one example.
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I've never made my own blog that details my life on dialysis, but I've thought about it. It seems it would be a lot easier just to have family "stumble onto" my blog and suddenly know all about how I'm doing. The problem is keeping that blog separate from other things, and writing it specifically as if I knew my family were reading it. There are a lot of things I don't want my family to read from me - this thread would be one example.
I think this is a brilliant idea! And you know, once you got into the swing of things, I bet you'd become quite practiced at keeping your "family" blog separate from, say, what you post on IHD. You've already sussed it out...you write the blog as if your family and only your family were reading it. You can start your blog but not tell anyone about it until you feel pretty confident that you've successfully removed more personal content from it. There are all kinds of blogs out there by people who are suffering all manner of things. It's cathartic. I think you should really carefully consider this idea.
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Ya know I completely sympathise. I tend to not be real open with my condition which can be a downfall. I don necessarily want to discuss everything, but by the same token I cant expect understanding i they truly dont understand. There are many books and brochures out there geared towards family. Maybe if u passed onie along and just say "I know that you are interested in my care and I thought you might like a little glimpse of some of the things I face" This will give him a brief overview of what "might" be going on but doesnt make it quite as personal and it will also give him a clue about your diet. So you dont have to sit through slow torture while everyone enjoys deset.
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I think you've done an excellent job conveying your feelings in your posts.
Maybe sending your Dad e-mail correspondance is the way to go for you.
I have 2 kids, 21 and 19, and I know they like using e-mail, texts, and Facebook. I have learned to adapt to whatever mode of of communication they choose. It sounds like your Dad doesn't really grasp how hard living with ESRD can be. I think most of our family members probably don't get it. Not unless their actually living in your household with you and see what you go through every single day.
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I made my friends and family watch a dvd from baxter on ckd. If he is really interested, he can spare the 45 minutes. Having kidney failure is one of the hardest things a person has to got through. Obviously your dad is not there on a day to day basis to see how this affects you. However, I think you are being way hard on yourself and your dad. Give him the benefit of the doubt. I have learned that people deal with difficult situations differently. Maybe your dad is not ashamed or looking down on you as you think, but is just worried about you and your future. Give him that chance at least. As far as communication goes, you are a great communicator in writing. Have you ever considered that you may have social anxiety? I could be wrong, but the thought crossed my mind. My dad and brother bothe suffer from that and take medication that helps. With all the stuff we already take, what's one more? Lol. Anyways, best of luck to you. You are not alone.
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I also had issues discussing how I was feeling as my kidneys deteriorated. Like some have mentioned, some people would ask and were really only looking for "I'm fine" and then others would ask and I would know they would sincerely want an honest answer.
Once I started dialysis in October, I created a blog on Caring Bridge and gave out the link to anyone who asked how I was. I told them it was easier to create the blog instead of repeating myself and they were all really good with that. Caring Bridge was really great once I had the transplant in December and all through my recovery at home. It ended up being a great way to let people know when I was having a crap day and when I was doing so-so all the way to feeling well enough I couldn't wait to get back to work!
Good luck to you. I know exactly how you feel.
Effie :)
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Obviously your dad is not there on a day to day basis to see how this affects you. However, I think you are being way hard on yourself and your dad. Give him the benefit of the doubt. I have learned that people deal with difficult situations differently. Maybe your dad is not ashamed or looking down on you as you think, but is just worried about you and your future. Give him that chance at least.
That may be true, and I always try to give people the benefit of the doubt. He may just be worried about me, but the way he keeps trying to push me to do things, and asking about all the details, just gets stressful. Maybe all he wants is for me to be set up to succeed, but he hasn't caught on yet that some of the things he wants me to do are hard for me, or would be hard for anyone.
Just as an example, he wanted me to get into UCLA for the spring. He kept pushing me and asking what my progress on that was, even after I told him they don't take applications for spring, period. Then he wanted me to get in for the fall. I applied just to get him to stop asking, even though there's practically no chance of me getting in. I don't know if it's unreasonable to expect him to figure out some things for himself, if he wants me to do them so badly, to see if they're even feasible, what with the easy access of information on the internet these days.
As far as communication goes, you are a great communicator in writing. Have you ever considered that you may have social anxiety? I could be wrong, but the thought crossed my mind. My dad and brother bothe suffer from that and take medication that helps. With all the stuff we already take, what's one more? Lol. Anyways, best of luck to you. You are not alone.
Oh, heh, social anxiety. I'm reluctant to really get into that here, because it's a public forum where people I know can locate and identify me. For now, I'll talk about it, and I hope I don't decide in the future that it was a mistake (because then I'd just edit the post and yank out this whole section).
I do feel like social anxiety is a big problem for me. I won't go into most of the reasons that I think that, but I feel a real need to keep the impressions I've made with people, especially my parents. I don't want them thinking I have big psych problems, or I'm going crazy, especially with (what I perceive is) my father's tendency to judge and my mother's (suspected) tendency to gossip about me. Right now I think that maybe professional therapy and possibly more medication could help, but I'm on my parents' insurance. My mother checks everything constantly - if there's a way for her to check up on me and be nosy, she'll do it. She'll read through insurance claims. She'll try to figure out my passwords and read my email, read my bank statements, log in to my pharmacy account. (I'm working on changing all my passwords.) As far as I know, if I go to see someone, and especially if I get a prescription for something obviously for head problems, she'll know, and she'll ask. So as much as it might help me right now, I feel like I can't even get help.
Once I started dialysis in October, I created a blog on Caring Bridge and gave out the link to anyone who asked how I was. I told them it was easier to create the blog instead of repeating myself and they were all really good with that. Caring Bridge was really great once I had the transplant in December and all through my recovery at home. It ended up being a great way to let people know when I was having a crap day and when I was doing so-so all the way to feeling well enough I couldn't wait to get back to work!
I'm planning to start a blog like that and give out the links, I just hope I can get through the very beginning of it. Once I start the blog, and someone asks me how I'm doing, I'll give them the URL. Especially the way my dad does things, he'll take it, save it, say okay, but then... he still wants to know how I'm doing. Usually in that situation he's not going to jump on the computer immediately to read the blog. He still wants me to answer about how I'm doing. He's like me, an engineer, and he wants to know any details that might influence how he should treat me or do things while I'm there. So I'll still have to deal with him at least that once. And if he doesn't read the blog and on a later visit asks again, I'll still need the balls to tell him, "I gave you my blog address, that's the only place I want to talk about how I feel. You need to read it if you really want to know how I'm doing. I don't want to get into it here." Like I've said above, that kind of thing is practically regarded as talking back, and it just doesn't happen in my family.
I always feel like I'm leaving things off when I finish a post in this thread. It's just all the complicated issues that go with these problems. I guess, if something seems unclear, go ahead and ask and I'll see what I can clear up.
And if you know me personally and you dug this up and all this is a surprise to you - don't mention it to me. :stressed;
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Oh, heh, social anxiety. I'm reluctant to really get into that here, because it's a public forum where people I know can locate and identify me. For now, I'll talk about it, and I hope I don't decide in the future that it was a mistake (because then I'd just edit the post and yank out this whole section).
I do feel like social anxiety is a big problem for me. I won't go into most of the reasons that I think that, but I feel a real need to keep the impressions I've made with people, especially my parents. I don't want them thinking I have big psych problems, or I'm going crazy, especially with (what I perceive is) my father's tendency to judge and my mother's (suspected) tendency to gossip about me. Right now I think that maybe professional therapy and possibly more medication could help, but I'm on my parents' insurance. My mother checks everything constantly - if there's a way for her to check up on me and be nosy, she'll do it. She'll read through insurance claims. She'll try to figure out my passwords and read my email, read my bank statements, log in to my pharmacy account. (I'm working on changing all my passwords.) As far as I know, if I go to see someone, and especially if I get a prescription for something obviously for head problems, she'll know, and she'll ask. So as much as it might help me right now, I feel like I can't even get help.
Of course, if you were to get some fixing-the-brainbox pills, it'd be a lot easier to talk to your parents about needing fixing-the-brainbox pills. It took me a long, long time to tell my dad that I have to take anxiety medications, but when I finally told him, he was supportive (a bit out of character for him at the time). It was a lot easier to talk about it, what doctors I'd seen, what other therapy I was or wasn't doing, how I felt when I was undermedicated. I thought his reaction was going to be really bad, but it was a brief series of questions and he hasn't brought it up since.
I know it's terrifying to think of having to deal with your parents hounding you about therapy or brain-medicating and the original anxieties, but you'll surely feel better talking to them about it when you've started to do things that will help you feel better. And even if you have to make a series of quick getaways and lock yourself in your room for a while--well, I certainly couldn't find fault in that. :cuddle;
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Of course, if you were to get some fixing-the-brainbox pills, it'd be a lot easier to talk to your parents about needing fixing-the-brainbox pills. It took me a long, long time to tell my dad that I have to take anxiety medications, but when I finally told him, he was supportive (a bit out of character for him at the time). It was a lot easier to talk about it, what doctors I'd seen, what other therapy I was or wasn't doing, how I felt when I was undermedicated. I thought his reaction was going to be really bad, but it was a brief series of questions and he hasn't brought it up since.
I know it's terrifying to think of having to deal with your parents hounding you about therapy or brain-medicating and the original anxieties, but you'll surely feel better talking to them about it when you've started to do things that will help you feel better. And even if you have to make a series of quick getaways and lock yourself in your room for a while--well, I certainly couldn't find fault in that. :cuddle;
I... can't believe I hadn't thought of that. Maybe that'll help me think about it. But are there other things to consider?
Would that sort of treatment have any effect on my transplant evaluation? That's the primary reason I never went looking for medical marijuana (here in CA) for my appetite.
If I can wait until after a transplant and after I've gotten stabilized, then I'll be in better shape to get the head treatment I need. It'll especially be more possible if I'm then feeling well enough to start working, and get my own insurance, so I can tell people when it's best to tell them, not when they figure it out on their own.
Thanks. :cuddle; I'll think about things for a while.
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Sorry that you are in this situation. I personally find it easier to lie or not tell. If someone asks how I am I always answer, "pretty good, and you?". I hate to have center of attention so I push away the "tell me all about your medical problems" conversation. I am also one of those people that find medical issues to be very very private and don't talk about them at Easter dinner. I am bewildered how people openly talk about their private issues(here at IHD it is ok). We get Christmas cards with info on so and so had a hysterectomy etc etc and I just freak. Why do others need to know that? ???
I just had a fistula placed last week and my aunt asked me what happened to my wrist. Oh, I had a ganglion cyst removed. ;D My extended family has no idea I have kidney problems and I like to keep it that way.
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Welcome and rant. We are all here to rant out our frustrations. It is healthy this way.
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Re anxiety meds and a transplant evaluation...an appointment with the social worker attached to your transplant center is usually required. I had mine about a month ago. Mostly, she wanted to make sure that I had enough support for after surgery (like someone to drive me to doctors' appts, someone to help with domestic chorese, etc) and also to make sure I had no substance abuse issues. We talked about the emotional and psychological issues created by ESRD; one of the first things that the transplant coordinator talked about the first time I met with her was emotional issues. Both the coordinator and the SW had been dialysis nurses at some time, and they were very well aware of the anxieties and depressions that accompany renal failure. If you have such anxieties, they like to see you take the initiative and get treatment for it before you go through the rigors of transplantation. If you think about it, that's only logical. The whole evaluation process is geared toward getting you in the best condition possible so that you can be more successfully transplanted; your body AND your mind have to be in the best place possible. Rather than hurting your chances for transplantation, I would think that being on a successful anti-anxiety regimen BEFORE transplantation would improve your odds on getting on the list asap.
Re your blog...not only is this an easier way to communicate your condition to people, it also removes the responsibility of an appropriate response from those who read it. If you tell people about your condition, they often don't know what to say. They don't want to make you feel worse, and they don't want to offend you, so they get all confused and inevitably end up doing exactly the wrong thing. If they read about your ESRD on a blog, then the burden of giving an appropriate response would be lifted from their shoulders Everybody Wins
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I have the exact opposite problem!- How do you deal with family who don't give a crap????!!
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One last thought...it is not easy for us to give you practical advice because we do not know you and we are not in your position. I am 53 years old, and it is hard for me to remember what it was like to live with my parents. But it does occur to me that perhaps you could reevaluate your relationship with your mother. Instead of trying to keep things from her (which just makes life harder for you because since she sees your insurance information, you can't keep that much from her), could you recruit her as an ally? Fighting people is so hard. Instead of expending so much effort in keeping information from her, could you share more with her and have her HELP you? If you merely suspect she is gossiping about you, you could be wrong, and all of this effort to keep things from her would just be adding an extra burden on you. From a parent's point of view, I would want to be as helpful as I could be in supporting my child with a chronic health condition, but it is hard to help if I'm not given the opportunity. It might be an idea for you to really think about what exactly you want from your parents and how you want them to extend that help (or not). Do you want complete privacy, or do you want them involved in your care? Maybe your mother snoops because she senses that that is the only way she is going to get the info she needs to be in a position to help you. If you want your mother not to speak about you and your condition to others, tell her that, and tell her that you are willing to be more open with her unless and until she starts gossiping. If you got treatment for anxiety (either by meds or therapy), would it really be so awful if she asked? Or would you be more comfortable if, like Karen547's family, she never asked and never cared? What do you want from her?
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I... can't believe I hadn't thought of that. Maybe that'll help me think about it. But are there other things to consider?
Yes. Don't trust any therapist with more than two afghans in the room. Trust me.
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Yes. Don't trust any therapist with more than two afghans in the room. Trust me.
As in dogs or blankies?
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As in dogs or blankies?
Blankets. It's bad news.
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excellent topic. while reading this i had the thought: his 2 daughters are coming here from out of state to visit. i am going to write to his parents and ask respectively and with compassion, if we can all meet at thier home and have a frank discussion. his siblings are in area and other grown children.
i will ask that everyone be there if possible, and will attempt to sit them all down, help them to relax, and give them a version of this they can wrap their heads around.
if this works, they will be educated and we may end up with some support and practical help, and can use this time to broach subject of donors (3 sons who've volunteered). they really need to and want to understand all this, and also whats involved with being a donor, and other issues. i have done much public speaking and ran groups so i think i can handle this if everyone is in agreement.
i'll post back and let you all know how it went.
my sister has a caring bridge site for her son "jack mccall", she says its been a lifesaver. i have a blog.
but i have to say that IHD is the BEST of them all.
thank you all for being here!
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Since shooting the family between the eyes is illegal, just remember you love them, they love you. God help us all!