Ignorant things people have said to you

[WishIKnew]

In the year since my bilateral mastectomy and kidney transplant I have, unfortunately,  gained a lot of weight.  I was commiserating with a friend last night after yoga when she said, "You may be as big as a house as long as you're on the right side of the dirt."  WTF!  Stupid and not helpful, wouldn't you agree?   

[jbeany]

In the year since my bilateral mastectomy and kidney transplant I have, unfortunately,  gained a lot of weight.  I was commiserating with a friend last night after yoga when she said, "You may be as big as a house as long as you're on the right side of the dirt."  WTF!  Stupid and not helpful, wouldn't you agree?   

Yeesh, that's bad!

[Riki]

I don't know.. sounds about right to me.. sound like she was trying to say that you gotta be happy in your own skin, and you've been through too much to worry about weight, as long as you're active, happy, and healthy, that's all that really matters..

That's what I always believed anyway.  My transplant surgeons are telling me otherwise at the moment

[WishIKnew]

Riki, what are your transplant surgeons trying to tell you?

I'm not happy in my own skin, I'm mortified by how much I weigh!  My oncologist and transplant team have never expressed any concern about my weight gain, but I'm miserable about it.

I feel like I did not live through all of that to spend the rest of my life fat...  blah blah blah.  I guess all other health issues aside, I don't like me at this weight, period. And a friend referencing me as potentially as big as a house does not help...  Make sense?

[MooseMom]

Yes, WIK, this makes sense.

I wish there was more information about how to lose weight while on long-term steroids.  I've gained about 5 lbs despite being diligent about what I eat, how much I eat and how much exercise I get.  Steroids mess with how your metabolism works; all the docs warn us about this, but they never tell us how to lose weight.  They treat it as just part of the price you have to pay.

Do you think it would be an idea to ask your tx team how a person on longterm steroids should hope to deal with this problem?  I'm going to ask the next time I have a clinic visit.  I weigh myself every morning as instructed, and one thing I have noticed is that my body seems to now be particularly sensitive to sodium.  If I happen to eat something salty for dinner, I'm heavier the next day.  Constant activity also seems to help me keep my weight down, but constant activity is exhausting!

It seems so obvious that we should be grateful just to be alive and off dialysis, but it is more complicated than that, isn't it.  When you look in the mirror and don't recognize yourself, it's really offputting.

[KarenInWA]

Then there's me. I've always been skinny, no matter what I eat. I have gained probably around 10lbs since my transplant. I've had to donate some size 8 jeans and pants, and even some size 10. I buy size 12 now. However, I like and have embraced my new size. I am still within the healthy BMI limits. Where before I was usually on the lower end of it, now I am on the higher end. Over the past 5 years, I have weighed as litte as 120lbs and now as high as 155lbs. I can tell you I am much happier weighing 155! I am 5'8".

A male co-worked came up to me a few months ago. He has always over the years make occasional comments about how skinny I am. He told me one day that I looked like I had gained weight - and that he meant that in a good way. I told him that yes I had, and thank you. It was an interesting exchange, but I appreciated it. I sometimes would get comments from people about how skinny I was, and it always bothered me. I never starved myself. I was just always skinny.

Just a different take.

[WishIKnew]

Thanks for understanding MooseMom and others.

I have discussed my weight frustrations both with the oncologist and the transplant team.  They offer no suggestions, reassure me that weight gain is normal and expected and tell me how great my labs are.  With Weight Watchers and yoga and walking and... I am barely able to maintain my 50 pound weight gain in the past year (meaning not gain more).  I weigh 100 pounds more than I did when I first got sick 5 and a half years ago.  Just plain not acceptable to me.  Inactivity and depression account for the first 50 over 4 years, Tamoxafin (chemo med) and menopause and transplant meds and depression account for the most recent 50, they say.  Oh, I know I'm off topic, but her words really hit a sore spot!

[Angiepkd]

My in-laws, who have known about my kidney disease for 25 years, were trying to plan a trip for June. My  husband told them we couldn't make definite plans because I may be doing my dialysis training during that time.  They told him he didn't know what could happen by then.  Maybe I would get better. Really? I have also had several people ask me how long I will have to do dialysis?  And my favorite, "are you on the list"?  I understand that most people are unaware of CKD and dialysis, but I thought my family and friends were paying a little attention all these years.

[gothiclovemonkey]

ive always been huge, since i was really young... so when i first started D i was told not to even consider a tx, because id never lose the weight (my dr said this) he said that hes been doing this for blah and blah years, and no one has ever lost the amount of weight i need to. Well, i did, i lost 100 lbs, and one day he says, why havent we tried for transplant? um DUH
Anyway, since ive always been so large, and im still rather large (and i gained back some of that btw, so im inactive for that, and some health issues, etc)
but i HATE how i look now. Im so used to my fat, that seeing loose skin drives me a little crazy...
My worry is that ill gain more weight if i get a tx, after losing whatever i need to get one... how crappy, would that mean that if i needed another, i couldnt get one, because im too fat again???
I understand why they want you at a certain weight, its healthier, and safer, but if they give me a drug that causes weight gain? hows that my fault??
They gave me some steroids not to long ago, short term, and ive gained back like 5 lbs... grrrrrr this yoyo crap is irritating!!
and i take other drugs that the side effects are weight gain... yay.
not to mention our 'diet' is mostly sugar and meat LOL

[Riki]

The thing that bugs me about told to lose weight by doctors is that I've always been big.  I've seen pictures of me from when I was 2 or 3, and I was a big kid then.  They always say that I'd be healthier if I lost the weight, but I don't see how.  Except for my kidneys and my eyesight, I have no other health problems, and I'm as active as I can be while on dialysis, since it sucks the energy right out of us.  Being inactive on the list because of BMI just blows my mind completely.  I'm also afraid of losing the weight, because even though my bones aren't thick, they're spread out, especially my rib cage.  It's huge.  I'd look like a fat skeleton.

I had a long conversation with the renal social worker about this today

[cariad]

It seems so obvious that we should be grateful just to be alive and off dialysis, but it is more complicated than that, isn't it.  When you look in the mirror and don't recognize yourself, it's really offputting.

Yes, it is unsettling to not look the way you are accustomed to or just the way you want. It is worse when doctors try to twist it into a a medical issue when it isn't. No, I don't think we should be grateful to just be alive and settle for less than whatever brings us total happiness just because we've had medical issues. Most people have had medical issues. Why shouldn't everyone just be grateful to be alive? Grateful that we haven't all been eaten by bears or died of plague or starvation or small pox? The modern world has vanquished many killers, I don't think we are obligated to be any more grateful than anyone else who has had a vaccine or lived in a house with clean, running water.

This is the sort of thing that makes me furious. This is why I go nuclear on anyone who wants to lecture people on steroids, or off for that matter, on just how simple it is to lose weight with diet and exercise. That is some evil quackery there. People actually do have different metabolisms and are meant to be at different weights, but a few doctors pulled some random numbers out of their.... let's say hat.... and voila, license to shame. I wouldn't ever ask a doctor how to lose weight, because they haven't a clue. (*warning* about to repeat boring backstory for the upteenth time) I was abused horribly over my weight as a kid - driving me to severe anorexia, destroying my relationship with my parents who still cannot own up to what they put me through - over what was entirely a cosmetic issue. I was already on a 1000 calorie per day diet, not one "adult" had the sense to say "Just what exactly do you suggest, doctor? That she stop eating entirely until you find her aesthetically pleasing?" (that's ultimately what I did do and I am surprised I did not accidentally kill myself). It is lucky for the world's male medical workers that I do not have daughters because if just one of them made a remark about her appearance, I would demand to know why the hell he's commenting on the attractiveness of my kid's body. Creepy, isn't it? Yes, it is. I've experienced it.

WIK, if I understand your acquaintance's comment, she was implying that your appearance shouldn't matter to you because you are still alive? That's a new twist on "not getting it" as I think it's more common to downplay other people's medical issues, but no less aggravating. Or was she saying that you won't stop gaining weight until you die? Sorry, don't mean to be so thick.

[Restorer]

As tiring as it is to repeat myself all the time, if someone asks me a dumb question, I try my best to politely and enthusiastically educate them - usually more than they asked for - and I don't hold back on the language.

My hope is that if they actually understand how incredibly crappy dialysis and kidney failure are, they'll feel motivated (or, maybe, just obligated) to step up and be tested to be a donor. Because otherwise I still have 3 more years of this crap.

If course, it's impossible to really show them what it's like, and they have lives of their own to worry about, so all I get is, "Man, I don't even know my blood type."

[Riki]

WishIKnew, I didn't mean to offend you in any way with what I said.  I would have taken a comment like that as a "could be worse" statement, and probably agreed or dismissed it.  I think that I may have a different outlook when it comes to appearance.  I'm very happy in my skin, which covers all 220lbs of me.  I had to desensitize myself to comments about my appearance, made by just about anybody, when I started growing facial hair in my late teens- early 20s.  I do feel your pain, though.  Trying to lose weight while on steroids or even after you've been weened off them is a royal pain in the, as Cariad said, hat. *L*

[jjneyjr]

You don't look sick, are you sure you're sick?
Have you seen a doctor?

Ron White said it best.

You can't fix stupid! 

[cariad]

WishIKnew, I didn't mean to offend you in any way with what I said.  I would have taken a comment like that as a "could be worse" statement, and probably agreed or dismissed it.  I think that I may have a different outlook when it comes to appearance.  I'm very happy in my skin, which covers all 220lbs of me.  I had to desensitize myself to comments about my appearance, made by just about anybody, when I started growing facial hair in my late teens- early 20s.  I do feel your pain, though.  Trying to lose weight while on steroids or even after you've been weened off them is a royal pain in the, as Cariad said, hat. *L*

A pain in the hat!!! Yes!

[MooseMom]

It seems so obvious that we should be grateful just to be alive and off dialysis, but it is more complicated than that, isn't it.  When you look in the mirror and don't recognize yourself, it's really offputting.

Yes, it is unsettling to not look the way you are accustomed to or just the way you want. It is worse when doctors try to twist it into a a medical issue when it isn't. No, I don't think we should be grateful to just be alive and settle for less than whatever brings us total happiness just because we've had medical issues.

I just want to make it clear that I do not think that we should just be grateful to be alive and off dialysis, rather, I was being sarcastic about how OTHER people seem to think this way. 

I didn't get the impression that WIK's docs were making her weight a medical issue.  In fact, they seemed to be entirely unconcerned and spectacularly unhelpful.

I'm sorry if I've gotten the wrong end of the stick, but I thought it was WIK herself who is very unhappy with her weight, not her doctors.  If her weight is making HER unhappy, then that unhappiness shouldn't be dismissed by her medical team.

I dunno...what does one do?  Just get over it?  Just accept that this is all part of being a tx patient?  I really don't know.

[WishIKnew]

You got it right MM, my doctors are "entirely unconcerned and spectacularly unhelpful."  (LOVE how you phrased that!) and I am beside myself! Thanks for understanding.  I can't seem to just get over it and I won't accept being this heavy.  So I will continue to seek.....

[MooseMom]

Please let us know if you are given any helpful advice. 

[Riki]

Please let us know if you are given any helpful advice. 

like THAT'S gonna happen...

hmm.. maybe I DO show my contempt for doctors a little too openly......

[gothiclovemonkey]

Please let us know if you are given any helpful advice. 

like THAT'S gonna happen...

hmm.. maybe I DO show my contempt for doctors a little too openly......

 
 truth!

And here is my most recent ignorant thing.....
Idk perhaps i was being sensitive?

the bf says to me, You have to put yourself In my shoes, Jennifer......................
scuze me? Ok, i will, you work.... ok... and what you do is probably not that easy, ill give you that...you chose to stay up all damn night playing video games or watching tv, and falling asleep on the couch so you have back pain and such, instead of going to bed at a decent hour, and in a bed... i dont think i can have pity there...
And,  you cant put yourself in my shoes? and you want me to put myself in yours? Please, trade me. PLEASE! Really???  Id much rather work than do dialysis!
Idk, telling me to put myself in his shoes really irked me. Like i said, perhaps i was being sensitive, but really? If you want to trade, by all means, ill work, you deal with the health problems.

[momgmb84]

I guess the thing that really made my Son, Husband and Myself shake are heads in frustration is when my Son suffered a suedo anurysm that caused a major shut down and an emergency cath. had to goin so dialysis could start a.s.a.p. It was scary as hell, it took 3 tries before a somewhat successful dialysis ocurred.  Gregg had gone through seven unsuccessful surgeries for a fistula and the eigth try was the winner ...he was out of his mind in pain from the anurysm and scared the newly developing fistula would blow out...he also was very wary of the cath. Well he came through but dialysis was never easy...went through 3 catheters and 2 very scary bouts of sepsis before fistula was ready...he does D 3x per week and is still learning to live with all the changes in his life...his function is 9% ....(BACK TO WHY WE SHAKE OUR HEADS) ...no matter how we tried to educate people Gregg received cards that said things like....."so glad you're finally on dialysis and on the road to recovery....or....."sure you'll be back to your old self once your dialysis is done"....and then....."it's about time they started giving you the medicine you need now those kidneys can heal."  It's been one year since Gregg's diagnosis and we've given up trying to explain to people who seem to have misplaced their brains.  Our circle of friends has gotten smaller "this is just too hard to deal with, we don't know what to say" so they say nothing or are absurd and fade away...the ones who get it are the ones we keep close...thanks for the vent ...Lisa

[Riki]

When a child gets sick, people get weird.. I was 12 when I started dialysis for the first time. At that time, we were living an a century old, 3 bedroom house.  We were renting this house.  A month or so after I came home from the hospital, our landlady arrived with an eviction notice.  She said she wanted to live in the house herself, which legally, she could do.  She did live in the house, but only for a few months. My father figures that the reason she wanted us to leave was because I had gotten sick and she was afraid we wouldn't be able to pay the rent

[jjneyjr]

That misplacement of brains is a good word for it.

Had someone misplace their brain today!
To stupid to even share!

You just can't fix stupid; even with duct tape!

[cariad]

It seems so obvious that we should be grateful just to be alive and off dialysis, but it is more complicated than that, isn't it.  When you look in the mirror and don't recognize yourself, it's really offputting.

Yes, it is unsettling to not look the way you are accustomed to or just the way you want. It is worse when doctors try to twist it into a a medical issue when it isn't. No, I don't think we should be grateful to just be alive and settle for less than whatever brings us total happiness just because we've had medical issues.

I just want to make it clear that I do not think that we should just be grateful to be alive and off dialysis, rather, I was being sarcastic about how OTHER people seem to think this way.

I got that, MM! I was agreeing with you and being sarcastic right along with you. I can see how what I wrote was not clear on that point, though.

I didn't get the impression that WIK's docs were making her weight a medical issue.  In fact, they seemed to be entirely unconcerned and spectacularly unhelpful.

Yes, I completely understand that, too, and maybe I was going too far off on a tangent with what I wrote. My experience is that it was twisted into a medical issue when it wasn't, in other words, the doctors used the only weapon that they had at their disposal to try to control my appearance. If they had said "Hey, we just think you're really unattractive for a young girl and it's sort of taking the shine off of being the ones behind your kidney transplant" even my star-struck parents would have, more than likely, said 'go straight to hell'. Say it's a medical issue and my parents were certainly not going to question that. My labs were always beautiful except during 2 brief creatinine spikes.... in 34 years.

It also makes my blood boil when I hear people being given the 'fat is unhealthy' spiel to keep them off the transplant list. For me they just used my appearance to shame me into starving myself, for others, they are literally using weight to withhold medical treatment. 

I'm sorry if I've gotten the wrong end of the stick,

You haven't!

but I thought it was WIK herself who is very unhappy with her weight, not her doctors.  If her weight is making HER unhappy, then that unhappiness shouldn't be dismissed by her medical team.

I dunno...what does one do?  Just get over it?  Just accept that this is all part of being a tx patient?  I really don't know.

I don't want to come off as unsupportive, because I went through the effing wars with this exact issue as a child so I know it sucks more than most people could ever imagine, but WIK's doctors sound pretty cool to me. At least it would have helped me to have someone who understood that this was not my own doing, that this is entirely expected when one takes synthetic cortisol.

To your question, I think the following are your options:
1. Demand to get off prednisone. Studies have indicated that there is no benefit, and possibly much harm, from long-term steroid use post-transplant. Stress is a killer and it's a killer because of cortisol. You are flooding your system with this poison every day that you take it and in my opinion unless there is a sound medical reason for it (and with some tx patients there will be) no one should be on prednisone for years.
2. Cut sugars out of your diet - very difficult to do but it is the sugars that are triggering insulin, and that is supposedly what reacts with cortisol to produce more body fat. Low sodium may also help by reducing extra fluid retention, especially in your face. Exercise as much as possible.
3. Accept the change in appearance, recognise that it is *not* because you are some out-of-control pig and be ready to trounce any of these sanctimonous twits who come into your life to explain that they did not gain weight on prednisone, so therefore *you* must be overeating. Because we all know how identical we are when it comes to how drugs affect us. 

[jjneyjr]

Well, I have to jump in here and add my 2 cents, please realize that I am not hijacking your conversation but I feel to need to address the weight issue. I have always been overweight and in college tipped the scales at 320lbs. If you didn't accept me for who I was I usually responded by breaking furniture by sitting in it. Yeah, I could tell if someone really loved that old chair. Opps. Trust me I am not making light of your problem but unfortunately doctors are too quick to treat the illness and not the person with a hell or high water bedside manner.

  So I say, demand what you need from them. Do not be scared because they wear white coats. They are an employee of yours make sure that they know that and that you are the boss. Don't be afraid they will drop you because it sounds like that is what they are hoping for.  It is no different than going to a diner and receiving poor service. Do you keep going back to the diner to that exact server that you left a penny for the last time you were there? Just my 2 cents!
You have the power to handle the situation any way you can to resolve it..
Cheers,