I think I'm about to lose it

[Adam_W]

  Ok, for the last six months or so, I've been feeling pretty good with daily dialysis. But, I have in no way returned to being "normal". What's driving me f'ing crazy is how my family thinks I'm super man and can do all these normal things just because I have a little white machine called NxStage. I made the mistake of mentioning I'd like to take a college class, and now some of my family expects me to go to full time college and get one of those super degrees. As much as I'd like to do some thing like that, I CANT! I would never be able to handle that much. I do dialysis every day, and I JUST COULDN'T HANDLE IT ALL. Taking a one semester class is one thing Being a full time student going for four years and taking like five classes a semester is something a lot of NORMAL people cant handle LET ALONE MOST DIALYSIS PATIENTS. There are some dialysis patients who CAN handle all that, but I'M NOT ONE OF THEM. I admire them, but not all of us can do that. I'm just sick of people thinking I'm normal because I'm not on in-centre anymore. I'm trying not to have a pity party and say "Oh woe is me!", I'm just saying that I'm not "normal" because I will ALWAYS have ESRD, no matter what treatment I do. To make things worse, I was just started on a new med to help headaches I'm having because of nerve pain in my head, and it makes me feel weak, drowsy, and dizzy all at the same time. My aunt was over to pick up my mom to go Christmas shopping, and the dog was constantly barking the whole time she was here. My mom yelled at the dog a few times to get her to be quiet, but when I yelled at the dog, my mother got mad at me. I told her that I feel like crap and the dog's constant barking is making me feel worse. She said that basically I should "stop complaining and deal with it" She said that sometimes she feels bad too, because her back hurts. She broke a couple vertebrae in here back from a seizure several years ago, and sometimes the pain is really bad. I'm in no way saying she's a wuss or anything because I understand (to a point) how much her back really hurts. I just think it's wrong to bunch my kidney disease in with back pain. They are two VERY DIFFERENT THINGS. I know my family cares about me and loves me, but I think they still think they understand more than they really do or can. My grandmother is the only one who can truly understand because she is also on dialysis. There are a lot of things I'd like to do like going to college, doing missionary work (something I was working on doing before I got sick), and working full time in the dialysis field. Sometime in the future I may be able to do some of these things, but I CAN'T DO THEM NOW! My dad was mad at me because I'm buying a new rifle. It cost $140 and he's mad because I'm "spending so much money" The way I look at it, with ESRD, I don't know how much longer I may have, and I should do things I enjoy. If shooting and enjoying that $140 rifle takes my mind off of dialysis and my disease, than it's WORTH EVERY F'N PENNY.Well, I think I'm done for now. Thanks for all of your support. In a big way, you people are a big part of what has kept me sane all this time. Thank you, Epoman for this site, and rest in peace     

Adam

[okarol]

Dear Adam,
I am sorry about the stress you're feeling. You're right. People see you as a functioning, capable person and the expectation is that you will just carry on like everyone else. No one knows your limits like you do. I think taking a class is a HUGE deal, and I admire you for tackling it. Your parents worry, I imagine, about your future and how you will take care of yourself. I think that it's hard for them not to want to push you, in your own best interests of course. I hope you will take on the things you want to do, and don't stress out. Being "normal" is so overrated anyway! You're doing a great job caring for your illness, hang in there my friend!
 

[boxman55]

Hang in there Adam, I'm with you on the rifle. If you enjoy something and it distracts you from ESRD for awhile GO FOR IT. as long as the outlay doesn't put you in a bind paying other bills. We still have to be somewhat responsible...Boxman

[Phurball]

Hi Hon,  I am so sorry you are having such a hard time.  Considering the "mother" in question is my only child I can not comment one way or the other.  The one thing I can do tho, is to tell you that I love you , always have, always will, no matter what.

I do understand your frustrations tho.  Since your Grandpa passed, I feel very much alone.  Now that I am on dialysis I have NO choice but to drive myself to my treatments and most importantly be strong enough to drive myself home. To an empty condo.   However...... I suspect that if you and I polled the good folks here we soon would discover that noone has the so called perfect life.   

Adam, you cant let others lead you down the road of your life,  basically its a walk we all make on our own.  You need to look inside of yourself and see just what it is you really want for your future.  Even tho I am 40 years your senior, I still refuse to give up my hopes and dreams.  You are right about time running out tho, it ran out for your Grandpa way to soon.  And because of that I refuse to just sit by and let this dang esrd rule my life and just wait for my time to run out.     ESRD = Everyone Should Run toward their Destiny !!  NOW !!  Even when we are so sick we cant seem to lift our heads off the pillow, at least we can still dream.   Heck even on my worst days I can close my eyes and be basking on a beautiful beach in the Bahama's.  ( of course there MUST be a goodlooking cabana boy with an icy umbrella drink in hand ) LOL. 

I love you my dear Grandson
Always and Forever

Nana

[Sunny]

Wow grandma, he's lucky to have you. I wish I had one of you.

[Sluff]

 Adam just being able to come here and explain your frustrations is a huge step. You are right on all counts, others don't feel your limitations as you do so it's not real to them. In other words" do not judge me unless you have walked a mile in my moccasins." rings true. As for the rifle, we all should be allowed to live a little until we can't.

Keep on keeping on friend.

[Deanne]

You sound very stressed out! Your family probably thinks they're only trying to encourage you to live as normal a life as possible. There just isn't a way for them to understand what it's like to be a young guy who *can't* do everytyhing other young guys can do. Rant away and then enjoy your life as much as you can (be careful with that rifle!!!!). Is it possible that the medication you're taking for your headache is also making you more sensitive / irritable about things? Not asking to criticize, but since you mentioned that the dog barking was so annoying -- do you think you were more annoyed about the barking than before you started taking the new medication?

It's great that you're taking a class. What's the subject?

[Adam_W]

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

[kellyt]

 

[Deanne]

Thanks for not taking my question about possible medication effects wrong. I just remember what prednisone did to my mental state and I know other meds can do the same, so I had to ask. I'm glad you're not feeling mad anymore. Ranting is a good thing!

I have a dog who spazzes out / goes into hysterics, too. It isn't like "normal" barking -- it's more like he really is freaking out. Sound familiar? If you find an answer, please share! I crate this dog when most people comes over, but then he barks non-stop in his crate until they leave. Still better than having him barking and trying to bite someone's foot! I think what would help if I had the *right* visitors is to get his attention and as soon as he shuts up for even a second, give him a treat. I know he'll just start barking again, but then get his (or in your case, her) attention again, wait a tiny bit longer and then give the treat, gradually extending the quiet time before the treat. I haven't done much with this myself but only because I don't entertain / rarely have visitors and most people who come over are contractors there to fix something.

[Adam_W]

Oh man! Hilda sometimes seems like the dog from hell. In fact she just pushed her way out the front door as my mom was getting a pizza from the delivery man. She actually chased the pizza man to his car before my mom got a hold of her. She didn't bite him and he wasn't mad, but she is getting difficult to control when people come to the door. We have a toy cap pistol that we use, and the noise usually makes her settle down, but not always. We don't know what to do.

Adam

[Sluff]

I have to put mine in the kennel when we expect people over.

[Deanne]

For starters, hand over that pizza, I'm hungry!!!!!  

Do you have the kind of door you can put a child gate in? That worked to keep my dachshund from escaping. Don't let those short legs fool you, doxies can run FAST and they go deaf when they hear their name called. They're also slippery little eels. The child gate saved me from many escapes. My other dog gets sent into his crate when I expect a delivery.

[Adam_W]

Hilda would just fly right over the gate. I'm not too surprised she acts this way, she's part German Shepard and part coyote. Normally she's the biggest wuss, but when she feels like she needs to "protect" us, that's when she gets going-just like a coyote.

Adam

[kitkatz]

Great rant.  I feel atlot of what you said in my life, too.

[jbeany]

I hear ya, Adam - and I want your nana - will she adopt another grandkid?  My gram is 90, and has been sick lately, so I've been running myself ragged trying to take care of her.  I'm getting really frustrated with trying to set up support people to help her cope with living at home.  Every time I find a way to get her in-home care to do chores or take care of her, she insists that she doesn't need to pay for any help because "my granddaughter can do all that for me."   Auuuuugh - NO, I can't! - what part of "I can't be here every day to help" aren't you getting?  I don't have the money to simply buy her what she needs, and she refuses to admit she needs anything.  She knows I'm on dialysis, and that I have to be home to do it, but she doesn't seem to get that I don't suddenly have endless amounts of energy to take care of her, just because the home dialysis makes me feel better than the in-center did.  I ran so much the first week she was sick that I ended up sick and puking all weekend.  That dehydrated me to the point that my access clotted, and I spent the next week dealing with that instead helping her - and she still doesn't seem to understand. . . 

[paris]

Jbeany, I am sorry you are having to do so much.  I think we all need our personal IHD island because we are the only ones who "get it"!  We can all live happily ever after together and no one will say "but you look so good" or "are you better yet?".      Are there any other relatives to help with your Grandmother? 

Adam, I hope you are doing better.  You are fortunate to have such a sweet Nana.  There is nothing like the love of a Nana (I am a Nana, too!).    Come here and rant all you want. And then go shoot your gun!  I would like to shoot something some days!  If we don't find ways to keep our minds busy and happy, we will all go mad with worry, fear and pain. Take care of yourself.

[Lori1851]

Adam,
Just wanted to send you a hug on here (((((((()))))). I cannot say what dialysis is like since I am not on it. I can say I know how it makes my son feel which is usually sh___y!!!! I find myself on the other side of the fence. I don't push Dustin . I feel he knows what he can and cannot do. Trust me his dream is to work on cars like he use to, He took 2 years at Vocational school and passed 2 certification test that no student had done like in years. Enjoy your good days and like I tell Dustin your just alil slow on getting started in life as far as work and other things BUT your time will come when you will be able to enjoy,
Lori   :snowman

[stauffenberg]

At my dialysis center they were very proud that one of their patients was going through medical school, which is one of the most high-intensity, demanding, and stressful academic courses in the university, mainly because they pack into just three years of study what in Europe they take six (in Germany) or even seven (in France) years to teach.  However, I could never believe how that student managed it, since I had to quit my job while on dialysis and was not able to work at any time before getting my transplant.

The encouraging news is that if you do get a transplant, you may not feel quite 100% as strong as you did before developing renal failure, but you will certainly be strong enough, healthy enough, and bright enough to handle any normal course of work or study.  I went back to my old job just two weeks after my transplant and never felt unable to handle all the stress that goes with it.

Your headaches sound like neuropathic headaches, which can also be caused by the damage resulting from accumulated toxins not cleared by dialysis.  Getting a transplant soon may prevent that neurological disturbance from becoming permanent.

I have two miniature dachshunds at home, which were bred in the 1480s to hunt badgers in pairs.  One would dig it up and hold it by the backside while the other would bark like crazy to call the hunter to where they were so he could kill the badger.  Unfortunately, now that five hundred years later they have become mainly housepets, they still bark as though they were out hunting badgers.

[Adam_W]

Well, the frustration continues. We've been making plans for our various family gatherings for Christmas, and we were talking about a planned party on Sunday. We were discussing how long we'd be there, which would be just about all day. Since I started dialysis, I haven't been able to handle long, all day parties with a lot of people in a small house and a lot of noise. Now, my parents are aware of this (or so I thought). So I said that I may not go because I wouldn't be able to handle the stress of it. My dad just looks at me and says "Why not, it'll be fun". I very briefly lost it and yelled "BECAUSE I'M ON DIALYSIS! I CAN'T HANDLE THINGS LIKE THAT". My mom then snapped at me and said something like I don't have the right to yell. I'm sick of people so close to me being so oblivious to my health problem. Oh gee, lets see now! I NEED A FREAKING MACHINE TO LIVE! How oblivious can one really be when they are so close to me? GRRRRR!!!! As for stauffenberg's comment about getting a transplant, please don't take this the wrong way because I know you're just trying to help, but I don't really want anyone pushing me to get a transplant right now. A few months ago, I thought I was ready for one, but there are just too many things that, pardon my French, scare the living shit out of me. Soon I'll be starting nocturnal hemodialysis 8 hrs, six nights a week, and that can conceivably give me clinical results that rival a successful transplant. I'm glad your transplant is working good, though and I hope it continues to, but it just isn't for me. As for the dachshunds, I would NEVER be able to have one of those dogs, the way they bark like that. 

Adam

[goofynina]

You are not alone my friend, so many times we sit around the table and my family talks about going to Disneyland or Universal Studios or just anywhere in general and i am the only one thinking, i cant walk that far, i cant climb the steps, i cant this and i cant that, but no one remembers that about me until i say something that is, then i am left feeling like the bad one cuz i think i make them feel bad.  It is hard living like this, but to be honest, i would much rather stay home than to go anywhere anyways, i cannot handle crowds, screaming kids and all that anymore either.  Gimme a little peace and quiet and we'll get along just fine  

[George Jung]

Yea it kinda sucks that we (dialysis patients) have to be more than the average person.  We are living just like everyone else with all of the everyday troubles of life and on top of that we have to live with the fact that a machine keeps us from dying.  No one can understand all of the time unless they have been there, even those closest to us, and we have to understand that.  We have to realize that there will be times when others "forget" but we also have to forgive them and just know that they can't always understand.

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 know it sucks but rather than getting yourself frustrated try to be more understanding.  There are times when I snap too and after I regain composure I often think of how I could have handled the situation differently.  Can you drive yourself to the party so you have an "out" when you need to leave?

[stauffenberg]

You wouldn't happen to have that girl's telephone number, would you?

[xtrememoosetrax]

You wouldn't happen to have that girl's telephone number, would you?

[lola]

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