I think I'm about to lose it

[goofynina]

Goofy you didn't tell us you went to georges party

*hiccup* OOPS, BUSTED  *cracks whip* whooop-pah 

[st789]

Same here.  Sometimes,  I feel like I can't communicate with people outside of this site.  Since I live in los angeles, people here are rude and always looking for an edge.   Is like they are all so important and don't bother them.

[paddbear0000]

Thanks for everyones support/concern. I'm not actually taking a class yet, but I'm looking at taking a basic one semester class for dialysis tech training (I don't think I would trust a centre's on the job training quality), or a class for basic bio-medical training. As for Deanne's comment about the medicine, I did consider that, but if anyone was around my dog when she really gets going, I think anyone would want to shoot themselves after a few minutes of it. We're trying to find effective (and safe and humane) ways to control her when she "spazzes out". I feel a lot better now, and I'm no longer mad at anyone. I do realize everyone is trying their best to help me out, but doing things like college and work have to be on my time. NxStage has helped immensely, but like I said, I still have ESRD. My nurse is talking to my doctor (easier for her to get a hold of him than me), and he will help me and my general care doc work out dosing. My GP did make sure it was ok for me to take it since I'm on dialysis, but I just may not be able to handle this particular dose.  As for the rifle, buying it won't effect any of my bills, so I see nothing wrong with buying it. Shooting is right up there with model building as far as helping me to NOT think about ESRD and dialysis, because when I'm aiming a rifle or a pistol down-range at a target, I have to concentrate so much to make sure I hit that target in the right spot, I can't think about anything else. I even tried using a picture of a dialysis machine as a target, and it worked a little bit, but shooting at a regular target, is even more effective at taking the dialysis thoughts away. Again, thanks for the support. I really needed it.

Adam

Have you tried a muzzle? You can get fabric ones that are gentle to the dog. And they work. I've used them myself for barking dogs. Warning, if you have 2 dogs, they may tag team and pull them off of each other! My dogs did that. It's hilarious to watch.

Anyway, Adam, your rant was spectacular! You should send a copy of that to your relatives, so maybe they'll finally get a hint. Maybe "accidentally" send it out to your Group e-mail list! 

[George Jung]

  ............................555 Su Lovin

[xtrememoosetrax]

Goofy you didn't tell us you went to georges party

*hiccup* OOPS, BUSTED  *cracks whip* whooop-pah 

[meadowlandsnj]

I was at a Christmas party on Monday night and there was this girl (a drunk girl who spent a good portion of the night on the stripper pole with a whip in one hand) who kept telling me to "lighten up".  I could have gotton aggravated with her but I know she meant well.  Little did she know that I was enjoying myself, I  had a beer, I just wasn't drunk.  I stayed for the entire party, until 2:30am, watched everyone drink and dance and live care free.  As much as I would like people to understand at times, I know they can't, so I try to be more.  I try to be the one to understand.

I went to my cousins engagement party two weeks ago and got a little drunk!!  I had like 5 Smirnoff Blackberry Vodkas in Cranberry Juice.  I didn;t drink anything earlier in the day so I really didn;t gain that much Monday morning but I went to dialysis with a huge hangover.  I needed that--I really did.  It was worth the hangover.  I had a great time and hung out with my family and just let loose for the first time since 1991 which was the last time I had gotten drunk.

Donna

[Adam_W]

Grrrrrrrrrr!!!! Does this ever end!!!! I'm currently not having a very good first Christmas season as a "dialyzor". Not really anything new, just frustrations of  people not "getting it". We went to spend the evening with friends yesterday, and toward the end I was getting tired so I laid my head down on the arm of the couch, and my dad looked at me and said "hey, if I can't sleep, neither can you". He meant it in a joking way (I think), but I came within an ace of yelling at him "WELL YOU DIDN'T HAVE TO BE HOOKED TO A F--KING MACHINE TODAY NOW DID YOU!" Today I've been kind of bummed about the continuing delays in getting NxStage nocturnal dialysis, and I've just been frustrated at the comments like "Well, nocturnal dialysis isn't that important, is it" I also hate feeling so upset during a time when I'm supposed to be happy. My family still thinks there's something "wrong with me" because I choose to go to church tomorrow instead of spending the day at a party in a small cramped house filled with loud talk and shrieking laughter and me getting funny looks and laughed at because I don't stuff my f--king face with food. Christmas used to be a time for me to be happy, enjoy time with family and friends, and celebrate the birth of my Saviour. Now it seems to just be becoming a time of depression for me. Like I said in my initial post, just because I'm on NxStage, doesn't mean that little machine has eliminated my kidney failure, It's just made it a little easier to deal with. By the way, I'm taking my original thread back away from discussions of drunk women-another thing that disgusts me.

Adam

[kitkatz]

Wow! Great rants Adam.  I went to a relative's house with my family and fell asleep on the couch for an hour. No one really said a thing about it. I guess I am lucky that way.

[okarol]

  Adam 

[paris]

Adam, keep on ranting. I think you are voicing how most of us feel. I know I have become very non-social and I am tired of explaining why.  We are here for you and we care

[angela515]

Sorry your going through a hard time Adam. It sounds like nobody in your immediate social circle understands your medical problems well, or your limitations you have for yourself. Have you tried setting them all down and talking to them, without yelling, and explaining in simple terms that dialysis is not a cure, and you still have every problem you had in center and yada yada and you can't do this this and this, and specify things so maybe they do understand a little better? I do understand completely that if someone is not on dialysis, they aren't always going to understand why you can't do this and this because it seems like such an easy thing to do for them, and YOU need to be understanding of that as they aren't the one's going through dialysis, they really can't comprehend what you are going through. Yelling seems to only stress you out more, in my opinion, and maybe you should try just walking away from the situation and taking a deep breath and calming down and come back and try to talk it out sometimes. I noticed in every post you used the 'I'm on dialysis and that is why I can't do it' reason everytime. Obviously if they don't understand the whole deal about dialysis and how you feel because of it, that isn't going to even be a helpful reason to make them understand.... like I said, I don't know if you have already sat them down and explained it like they are 4 yrs old, but if you haven't you should and if you have, maybe print out your rants or your exact feelings on how you feel everyday because of dialysis and just lay them everywhere and pass them out when there being ignorant. They have to one day take the hints and at least be compassionate.

 

[Adam_W]

Thanks for the advise, Angela. With some people, I haven't been able to sit down and explain to them, but those seem to be the ones who understand the most. It's the ones that know more about my medical condition that seem to be the most oblivious. Fortunately, the only "yelling" I've done is on here. There have been times I've wanted to yell and cuss out loud because of my frustrations, but I restrain myself from actually doing it. I feel fine now as far as this whole issue goes, but I expect to have at least a couple instances of frustration in the next few weeks (mainly at Christmas parties). I'll do my best to explain my situation so people can understand it, and I know that these frustrating events aren't the end of the world, but they sure do suck when I'm dealing with them. I'm really glad Epoman gave us such an awesome site with awesome people to come and discuss (and rant about) this stuff.

Adam

[lola]

Adam some people in my family act the same way at times I think at times it's denial, lets pretend it's not that bad kinda thing and it drives me crazy.

[KT0930]

Adam, although I haven't had anyone try to push me to do more than I feel I should (thank goodness!!), I do get very tired of hearing "but you look so healthy". But I'm not healthy, I need someone to give me a kidney!

I'm sorry you're having the problems you are. Go out and shoot your rifle. I've only shot one or two guns in my life, but I know what a great stress reliever it can be!

Also, a little off-topic, but Goofynina, if you really wanted to do those trips with your family, you can rent electric scooters at the parks daily. I rented one from a local company when I went to Orlando for a week in September, and it saved our vacation. I could actually spend the whole day in the parks with my family and not make us leave after two hours because I was exhausted. In Orlando it was only around $30-$40 a day.

[paris]

MY TURN!!    Yep, I lost it tonight! Must be the holiday season.   So, today I had a party for the grandkids. It was the only time this week that all 7 could be together---divorced parents share them on Christmas Day and no on is on the same schedule.   I make brunch for everyone; sausage pinwheels, egg/ham/cheese casserole, monkey bread, pigs in blanket, fresh fruit, and lots of holiday sides (cheese, dips, etc.)  The cousins exchanged gifts, we played charades, make ornaments. We had a really good time. 7 kids under 10 can be very lively but they have such fun together.  I was tired before everyone got there, but by 7pm I was totally exhausted.  I know my family loves me, but they just can't accept the fact that I can't do it all anymore.  I want to--just can't.  My oldest daughter and 2 little ones decided to spend the night. By 9:30, they were all still up, I needed to straighten the kitchen, wrap some presents, make lists of what needs to be done tomorrow, do a load of laundry.    My daughter was frustrated that her kids weren't falling asleep and felt I wasn't supporting her frustration, so she decided to just go home.  One thing lead to another and she's upset, I am upset, AlohaBeth is in tears.  I finally lost it and said I just need people to acknowledge what is happening and stop pretending everything is fine.  So, now I am crying---my daughters are crying saying it is  too hard to talk about me not always being here. But, I need to talk about it! I need people to jump in and help. I need all of them to ask how I am, how my appointments are, what my levels are---I need people to talk about it.  My husband won't talk about it at all. The nights I can't sleep, he thinks it is because my legs hurt.  No one hears me throwing up. No one notices that even though I cook for an army, I don't want to eat any of it.  I am not strong enough to do this. I am the one they lean on-----I need to lean right now.  Sorry guys!   I know this is the only place I could go with all of this.  Tomorrow will be better.  I am not a cryer, door slammer, dish thrower; but I may become all of these!   Holidays are hard, aren't they?  Too much going on, too much to do.   Oh yeah---we all made up, apologized, said how much we love each other.  Now it is late and I can't shut my mind off.  Ambien may be my best friend tonight.  Thanks for listening and for being there.   

[charee]

hang in there

[lola]

 

[Adam_W]

  Hang in there, paris. I didn't even mention all the times I've been told by my family that they "don't want to hear a thing about dialysis or kidney disease because it's hard to deal with". I sometimes feel like bursting out, "Well, it's so hard for YOU to deal with it? Try actually doing it" (I never have actually "burst out" like that, though). I haven't even been doing this a year, and there are just times when I need to talk about it. My mom said the other day that sometimes it really makes her upset when she comes into my bedroom and there I am hooked to this noisy machine. I can understand that because I do know it was hard for my family to deal with, especially with the suddenness of all this. I mean, one morning I'm getting up and getting ready for church, and I'm in the hospital before the day is out. That would be hard on anyone-patient or caregiver. But sometimes I just need to talk to someone about it. I stayed with Phurball the night before Thanksgiving, and we stayed up until 12:30 at night talking about dialysis since now we are both on it. Like we've all said at one point, no one can understand fully unless it is happening to them. I'm just glad to have a place like this where people will put up with my rants when I need to let one out. So, paris, rant all you need, because we can more than relate. 

Adam

[fluffy]

Man, i know exactly how you feel, especially the not knowing how much longer you'll be around part. most people are always gonna be insensitive to things cause its impossible to understand unless youve been there. just keep hangin in there, thats what i do.

[Psim]

I am the one they lean on-----I need to lean right now.  Sorry guys!   I know this is the only place I could go with all of this.

Don't be sorry, Paris. IHD has big shoulders and a strong back -- lean all you need to.  Hope things are going better today, and the meltdown has all good after-effects -- washing out stress, opening communication.

[goofynina]

I am the one they lean on-----I need to lean right now.  Sorry guys!   I know this is the only place I could go with all of this.

Don't be sorry, Paris. IHD has big shoulders and a strong back -- lean all you need to.  Hope things are going better today, and the meltdown has all good after-effects -- washing out stress, opening communication.

So very true    and that goes for EVERYONE!!!    nicely said Psim  

[del]

I'm not on dialysis but my husband is.  My family don't understand that I can't visit like we used too ( They have never visited me much) .  I can't leave him to do nocturnal by himself. I just wouldn't do it.  They know nothing about dialysis and don't seem to want to.  My family lives about a 4 or 5 hour drive away and just don't understand that this is a little too far to drive and visit for one night!!!  A couple of my sister's are pissed with me I think since mom died last week. I went to see her 2 weeks ago first when she went in the hospital.  She got really sick after that and I didn't get back to see her.  Hey it is winter here and it is such a long drive.  I did drive (me and hubby) 5 hrs each way to go to her funeral. 2 of my sister's barely spoke to me.  Nobody asked me for any say in what I wanted at the funeral everyone else was asked.  After the service and a little get together at the church hall the rest of the family all went to my sister's house to open cards.  Nobody told me about it so we came on home. I found out about it the next night. I think it is all because I just couldn't go see mom anymore before she died. I would never let on to them how I feel.  Hubby says f#$% them but not always like that when its your family.   Just wanted to rant too.  It is not always the dialysis patient that has to deal with this shit but the care giver too.

  to all who are being treated or feeling like this.

[livecam]

You should try not to feel so bad about all of this Del.  You are doing the right thing putting your husband and his health requirements first and if some family members don't understand or don't want to that is their choice.  These kinds of things are mighty disappointing but remember there are plenty of good people around for every family member that isn't.  You take great care of your husband and shouldn't worry about what some members of your family might say or do.

[okarol]

I am sorry del, it's tough enough to have to grieve the loss of your mom and then to feel the lack of any compassion from your sister's is really tough. I know you were torn about going to see your mom and I really don't think it was an option. Everyone mourns differently. Perhaps that's all your family can do now. You're right, no one really understands what a caregiver goes through. Sending you love and hugs 

[Adam_W]

Well, despite all the frustrations, I made it through my first Christmas on dialysis. It did go out with a bang, though. The day after Christmas, I had my clinic visit, and my blood sugar crashed when I was there (second time that has happened when I was at the clinic), and after talking to my doctor, I was diagnosed with hypoglycemia, which I know puts me at a high risk for diabetes. So, I was already stressed about that. Then I started my dialysis treatment, and I started getting alarms that I couldn't clear, so I had to terminate my treatment and prime a new cartridge so I could restart. That got me so frustrated that it didn't take much to set me off. I don't know who "threw the first punch", but I ended up getting in a very big and very loud argument with my mom. It was mainly about her level of understanding of what I go through every day. We both needed to yell, and we both needed to be yelled at, and we both felt a lot better after we cooled down. Everything has been good since then, and I hope it stays that way for a while.

Adam