Rant: Repeat Offenders

[PrimeTimer]

    My husband does home hemo-dialysis. After spending nearly a year now trying to inform and educate family/friends on ESRD and dialysis, we are STILL hearing the following remarks being repeated: "why is he still working and not on disability?"  "his doctor can put him on a registry to get a new kidney" (he doesn't want a transplant and we've both explained in length all the reasons why). We've also been told these gems: "certainly you are not implying that only wealthy people can get transplants, are you???" One family member asked "any chance you'll get your old life back?" while another calls dialysis "analysis". Yeah, that's right. We analyze his kidneys at home five nights a week. 

[caregivertech1]

It's really truly amazing how friends/family just don't get it. We just roll with it. In a way that's a good thing because my wife and I appear just like a normal couple. Despite being "retired" baby boomers we downhill ski, hike, go out to dinner with friends etc,etc.. They all know we do dialysis 5 days a week but when I answer questions about it we get these blank stares so now I just say "we're really doing well, it's no big deal". I used to describe the 2 1" needle sticks, drawing 70 blood liters for cleaning and of course putting it all back, not to mention the inventory needed with Nxstage. The old saying "unless you've walked in those shoes......".

[noahvale]

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[Michael Murphy]

 The one that annoyed me was when my boss scheduled me to work every week end one July I complained that I did not have a day off all month he said I had every Monday Wednesday and Thursday off.  I obviously went to dialysis on those days, and worked 12 hour days Tuesday thursday Saturday and Sunday' all month.  It was that that finally drove me to put in for disability.  Now I get days off.