People loved me a lot more when I was sicker...

[Savemeimdtba]

It is sad that I still wish I was sicker so people would call / write / send cards, etc.  Last year around this time, pretty much everyone I knew sent me Christmas cards and presents and now, this year I don't have any cards yet I know it sounds kind of stupid.. but it makes me sad.  I know people still love me of course, but they're so much more expressive with it when you're sick.  Hard to adjust, but I guess I should be thankful that I'm well enough to not have people feel bad for me and send me stuff... but it doesn't hurt Life still sucks occasionally. 

Anyways, felt like posting that here for some reason, thought maybe someone here would understand.  While i'm on the "no love" subject, my dialysis clinic isn't giving me any either.  I haven't had a IQ drive for my cycler since August and no one seems to care or check to see how i'm doing... I guess they figure if my blood work is good, I'm fine.  My PTH has been high and my Dr. perscribed a medicine two months ago.. I still haven't gotten it, PTH keeps climbing.  Must be ignore-Kristi season.  My weights been climbing since I started the cycler.. and I tell them about it and all they do is yell at me.. won't help me figure out what's wrong and fix it. 

And um... to end this on a good note, I'm getting married in April!  Found a pretty dress to hide the catheter and I plan to feel like a normal princess on that day! 

[galvo]

Kristi

I've found that most people don't give a damn. I have, maybe, six people who care, and most of them don't really understand. The only support that I rely on is that supplied by the folks here on IHD.

I was also fighting with the cows at the dialysis unit yesterday. They keep wanting to take fluid off me, despite my telling them I'm peeing at 3500mls+ and the neph said as recently as last Thursday that I was not retaining fluid. If they yell at you, yell back twice as loudly! I did yesterday along the lines of" I may have a disease BUT DON'T TREAT ME AS THOUGH I'M AN IDIOT!!!". I wasn't spoken to for the rest of the session. Oh! I might have added something like " It's bad enough having to be on dialysis, without having to fight with you lot!". Quite a fun afternoon.

It's a job for them. For you, it's your life. Fight hard and loudly!

Tremendous news about your forthcoming marriage. You won't only feel like a princess. I'll bet you'll look like one! Big Congratulations!!

[RichardMEL]

Kristi, I'm a little confused by your post.

You say your PTH is going higher and higher and the doc perscribed meds - but you haven't gotten them - and you wonder why the PTH is still climbing? Why have you not gotten and taken the medication as directed?

I also don't understand your comment that "now that I'm not sick" - huh? you've got ESRD - of course you're sick!! Every single one of us on dialysis is SICK! We might not look it, and we may not throw up every other minute and whatnot, but of course we're still sick. I'm not quite sure what you mean?

I've never gotten (or wanted) sympathy cards or presents or stuff. I prefer to be treated as normal as possible. If I need to make diet adjustments or whatever because of my disease/dialysis I do that and do not expect those around me to change or bend for my requirements. Obviously my work knows and understand I leave Tuesday/Thursday afternoon because I go to D, but that's pretty much it as far as they are concerned. My family of course know, but I try not to impose my requirements on them except if they invite me for a meal and are having soup I just ask for a very little bit and that sort of thing. I'd rather not have people say "oh poor you" and treat me like an invalid or something - it would make me feel worse I think. Luckily I can live a mostly normal life within the resitrictions of dialysis - i do work and look after myself and my kitty and all that and so far so good

I suppose everyone is different.

anyhoo congrats on getting married - I'm sure you'll look gorgeous in your dress - we all want to see! (of course *I* am heartbroken you are off the market though!!!  )

[dwcrawford]

Congratulations on your upcoming wedding.

But now that you are feeling better (less sick) maybe you should send cards of appreciation to those who comforted you last year.  Don't join the group of "i'm sicker than you's".  Rejoice in feeling better.  Like Richard, I much prefer that most people don't know I am sick and to let those that do know start forgetting.

[Savemeimdtba]

Richard, it's not ME that won't go get the medicine, I'm not an idiot Medicaid / Medicare won't approve it.  The Dr. first prescribed one drug, medicare took forever to approve it, said the paper work was just sitting there and nothing they can do.  Then he prescribed another one (sensipar I think) and now we're waiting them to approve THAT one which they said would be quicker... been two weeks. 

Secondly, not saying I won't people to pity me.. just for people to care like they did when I was visibly sick (sure, I'm sick now, but I feel fine and look fine). 

Thirdly, I have always thanked the people who have supported me.. I think this thread was misunderstood.. it's kind of like people are always around and calling when things are bad and they're worried but when things are good, they don't call or check on you - does that make sense?

[dwcrawford]

I do understand what you are saying but I don't think that is the way that it works in  real life.  I'm sure they still care.

[RichardMEL]

Sorry hun. Like I said I didn't understand. I didn't mean to sound like I was accusing you or anything. See I live in a different system where if the doc perscribes it, it's usually on the PBS and we just go get it. Sometimes we need to get special approvals, but the doc handles that. I'm on Sensipar and that's done wonders to lower my PTH. I hope medicare/whoever can hurry up so you can get it and hopefully it will really help you.

Yes, your final point makes sense absolutely. It's the whole "you don't LOOK sick" kind of thing - people see you looking normal and OK and just think you must be - yes I get that (had it again with my father just the other day who saw me dressed nicely for a function and he said "oh you're looking so good! you MUST be well!").. uh yeah well it's all relative.

I guess in a way that we can look/seem to be not so sick is a tribute to the fact that, for us, dialysis is working the way it is supposed to. That, of course, doesn't mean we're cured or really better or anything like that - of course WE know that.

I also think that there's a time factor involved with chronic diseases like ours. Let's say you break your leg, or have a heart attack or something and are in hospital.. everyone comes rushing.. oh, what's wrong.. you poor thing... and they KNOW it's immediate and the effect is right there and apparent.

With kidney disease, or cancer, or other long term chronic illnesses it's like it's there for YEARS and it's hard for people to see any real changes (which is a good thing in a way if you're stable and being propped up by dialysis) but it means that yeah, as time goes on, people just take it for granted in a way and it doesn't have an impact on them unless they're exposed to it daily (ie: close family, partner etc). Now let's say you suffered some kind of acute problem say an infection with your catheter or something that took you out of normal circulation, into hospital or something, then people would go "oh no! she's sick!" and make more notice.... but we don't want THAT to happen!!!

This reminds me of someone I know who I was talking to the other day. She works in a hospital setting so knows a bit of medical stuff... she knew I was on dialysis and i thought she knew what that meant. We hadn't talked for a few months but we caught up the other day and she asked me if I could do something and I just casually mentioned no, I had dialysis that day. And she was like "what? you're doing that sill?" and was shocked at my 3x/week, 5 hour session deal, fluid restrictions etc.. it's like she just thought I did it once and then stopped or something. blah.

Not much we can really do about stuff like that I guess. Part of dealing with having a chronic illness I guess.

Sorry for my misunderstanding....

[cariad]

Kristi, it sounds like a frustrating time. The meds situation is ridiculous!

I think I understand what you are saying about feeling ignored. I wonder if you are initiating contact with people? Sometimes, people fall into roles, like "the person who calls to check on everyone" and others often forget to reciprocate. I say if they don't ask how you're doing, call them up and tell them anyway, and ask how everything is going with them, too. It's good that people are not worried about you as much. It doesn't mean they care any less if you end up calling them and not the other way round.

Congratulations on your wedding! People will likely be calling, writing, and sending cards quite frequently over the next few months, only this time it will be to share in your joy!

[pamster42000]

 I think I know what your talking about. You come to think these people who sent cards etc are true friends and you kinda expect the cards to continue when your feeling better. Most people send cards to show their concern when you are sick and just want you to know that they are thinking of you, after it appears you are doing better most people don't send cards after that. I've come to see that If I don't send a Christmas card to certain people I will not receive one from them, but if I send them one I usually get one from them.  Your true friends send a card even if you don't.
Your Dr. shouldn't be so passive about your medications that you need to lower your PTH levels. You have to keep bringing it up to him that you still don't have your medications often.  Visit with your social worker with Medicare and Medicaid and tell them the importance of starting the medications right away. Be the squeaky wheel that gets the oil or down the road your going to be in trouble with your bones becoming fragile. This isn't a time to feel sorry for yourself..you have to stand up and be heard.
Ok the lecture is over.  Congratulations on your upcoming marriage! I am very happy for you! 

[Hanify]

I am one of the 'lucky' ones cos I have cancer as well as renal failure.  People are sooooooo much more sympathetic about the cancer, but don't seem to pay any attention to the dialysis.  Of course, we'd all know that it's the dialysis that has a waaaaaaaaaaaaaaay bigger effect on my daily life than the cancer does.  I do understand what you're saying - sometimes I'm torn between wanting to be normal and people not know anything about my illness, and wanting to get all the attention I got when I was really sick.  Hard to beat what's happening inside your head eh?
Good luck with trying to feel better about it all - it IS fantastic that you are so much better, and they do still care - honest.

[boswife]

well congrats on your upcomming wedding    what a great event to look forward to...Sending blessings your way for a wonderful life together.
And for the other part :-)  i really do understand (through hubby) how that super attentitive vs non attentiitive stuff from friends and family is.  It's sooooooo powerfuly laid on ya while your really in questionable health.  I think thats really a motivater to get your health back to join your loved ones. But then as all that attention slows down and people get back to their lives, i know it sort of hits ya just as you discribe it.  My hubby even told me one day.......i almost miss being sick..lol  Well, yould think he only sort of ment it,,,,,nope!  *he*  loves feeling good, but loves that im overboard on the caregiver part and could live like that forever. ..  Well, i tell ya, i love him just as much now he's feeling better, but am taking some time out of "servant to the helpless hubby" to gain strength for the next bout.    Im sure you to are just as loved, just life goes on thankfully, and your dear ones will be there, with strength, to go it again if needed.  Hope this came out right... im all tuckered.

[TeenHatesDialysis]

Congrats on your upcoming wedding. Please PM me your address, I would LOVE to send you a holiday card.

[Savemeimdtba]

Thank you guys for all the well wishes and the understanding I am VERY excited about wedding and will definitely share pics!
 
As for the medicine.. I really do not understand the situation.  The Dr. was livid that I still didn't have it.  He personally called medicare to figure out what needed to be done and he did what they wanted.. but we're still in holding.  I've called Walgreens and they've been nothing but rude (which I do not understand either.. they've always been very nice).  Like I said, I have no idea what's going on with this situation or what to do about it.  I'm not even sure WHO my social worker in right now.. my clinic has been in limbo since August when my original nurse took a different job.  Now all we have a temp nurses and they barely do anything and don't know me at all.  Haven't seen the dietician around in a good 2 / 3 months and the social worker (one of the subs) says she'll get back to me but she never does..  So, we're stuck in that transitional period and I'm sick of it.  It's been long enough, they should have found a full time replacement staff by now, it's ridiculous.  Nothing I can do about it at the moment though.

And no problem, Richard I was like "why is he being so mean??" heh, i'm an over-reactive girl sometimes. Sorry 'bout that. 

[RichardMEL]

I'm only mean because I love.. ya know?!! 

[pamster42000]

When I mentioned the social worker I meant your caseworkers with Medicaid and Medicare. Ask them what the delay is...they are suppose to be helping you. If you and your Doctor keep bringing the subject up about your medication maybe they will get tired of hearing from you and make a decision.  You just have to keep bringings this subject to their attention....they have so many cases to deal with.

Also contact the company that manufactures the medication...sometimes they have programs where they supply you with the medication if you can't afford it.

[paris]

Can your neph's office give you samples?  Their is one man that my neph always gives samples of Hectoral to because it is expensive.  It is for PTH.  Don't know--just trying to think of answers for you.   

[topazbeauty]

Kristi-

I think I understand how you feel but in a slightly different way. I would like to assume that we all have people in out lives that love us and care for us, whether they verbalize it or not. I think that what frustrated me the most was not that I wanted to feel special or that I wanted to hear all the time that people were sorry for me or were concerned but more that when I was sick people did care more openly. It's one thing for a distant relative to find out you are not doing well and give you a call. But for my family love was not a word that was used on a daily basis. It was just understood that in a family you loved eachother and cared for eachother. But whenever I would have a bump in the road all of a sudden everyone told me how much they loved me. It was like they were afraid that they wouldn't have the chance to say it so they felt like they had to say it all the time. It actually made me feel worse, it made me feel like I was at my ends.

After talking to some people about it I came up with a very simple proposal that makes me feel better whenever it happens. When you are sick, and I mean visibly sick for people to see and notice, there is a part of the human brain and wants to make you feel better. And since most people feel best in loving relationships that's how the emotions get conveyed. When you get better it's not that people don't still care, or still love you, but they are relieved that you are feeling better so you don't need as many reminders. And frankly it hurts people to remind themselves that you may look better but you are still a very sick individual.

I know that it sounds stupid and that people should be able to express their emotions at all times, but if everyone did that you would never have those people that get away or missed connections. Anyway, it took me a long time to figure out this and it really helps me. Maybe it's not how you think, but I suggest talking it through with someone and finding your own hypothesis.

[fc2821]

  I know how you feel. After a while the people I was close to, the ones I worked with, stopped calling or dropping by to see me. In law enforcement the people you work withare your "other family". You have been through a lot together and all about each other, especially after 23 1/2 years. I guess they tought,"hey he can walk now and he is on dialysis, so he must be ok."  It hurts your feelings, wish I could take that away from you. But We both have friends here who help make things better.

I hope they get the med situation cleared up soon. Let us know how it turns out, people here care about you.

Best wishes on your up coming wedding, and good deal on finding the dress.

[jbeany]

It's the same when you have a death in the family - there's a never-ending supply of casseroles the first couple of weeks, then everyone else gets on with their regular lives.  The grief isn't really any better after that short of a time, but life goes on for those not directly affected and they forget about it.  I think it's especially hard for people to "get it" when it comes to dialysis.  When I was feeling good, I went to parties, went shopping, cleaned house, even worked some.  No one sees the bad parts.  They didn't come to dialysis and watch me pass out in a puddle of sweat when my bp drops.  They didn't see me when I was dragging myself home and could barely stagger down the hall to the bed after a bad run.  They certainly didn't see me when I was puking, since I wouldn't leave the house on those days. 

It may seem like they are uncaring, but I think it's more that they are just uninformed.

[dwcrawford]

And when you are really really sick like you were Jb, they just don't know if you wanted them to butt in or not. 

[YLGuy]

I am so tired of people telling me that I look great, healthier than ever.

[dwcrawford]

Why for god's sake?  I'd listen to people tell me I look great all day long.  I mean just because you have the kidney problems doesn't mean that other's don't have good eyesight.

[Poppylicious]

I can understand this ... Blokey does look so much better in every way since he began dialysis, but because of that people assume he can carry on as he did before he first got sick.  By 'people' I mean his mother, and by 'carry on as he did before' I mean the trip to Belgium she likes us to drive her on every few months so that she can buy her cigarettes cheaper.  We had opted to stay in a hotel overnight on the way back and she assumed we wouldn't need to anymore because he hadn't had the operation he was scheduled to have two weeks earlier.  No!  We were going to stay overnight because he works full-time, comes home shattered from dialysis three nights a week and then you expect him to drive all the way to Belgium and back in one day!  Tsk. 

I think jbeany is right; it's more to do with being misinformed rather than deliberately being uncaring. 

Congratulations on your upcoming wedding!  Enjoy all the planning and preparation!    

[girliekick]

my medicare pays for my hecrerol, but its my primary. Tell ur doc to get u some samples asap, then work on the script.
Pd solution has lots of calories.... Its sugar water so lots of empty calories. Congrats on the wedding. That is wonderful. Pls post pick and tell us all about ur wed plans.
As for the lack of attention. I get it. I went through a period of time i was is surg &/or multiple times a month. It didn't take long bfore it was just me and mom, usually boyfriend, no cards or flowers, and fewer calls. At some point i asked for flowers, and on my birthday(had surge) asked for a homemade cake w fresh flowers on it. I got it too. Its hard to stay upbeat, and those visual reminders are good for the spirit. So i say if u need some, there is nothing wrong wTACTFULLY letting people know a lil encouragement is welcomed.
Girl

[renalpenguin]

I totally understand! When I just had "kidney disease" people had no sympathy. At all (except my family- but sometimes even they didn't "get it" totally). But now my gfr is 16 and I'm working on getting on a transplant. Now people gasp and act totally different.

Just hang in there! 

And congrats on your wedding!