Pet Peeves

[annekat]

I know there've been threads about this before, but not for awhile, and I need to vent.

I'm so tired of people disregarding and minimizing what I say about what having GPA does to my life. I'm trying to educate them but they just want to gloss over it. Maybe I should just make copies of the Spoon Theory and hand them out to everyone I see. I'm sure all of you and people with other AI diseases know what I'm talking about.

The prime example bugging me now is that I tell people that the disease and the meds to treat it cause mental confusion, memory problems, and fatigue, and that I just don't have the stamina that I used to have, even though they may see me out there doing "normal" things in the world with some success, just like them. Since I am 60 years old, and the offenders are around the same age, I INVARIABLY hear, "Oh, we all go through that as we get older...". Well, DUH! I already knew that! The point is I, and many of us, have a double whammy. If it wasn't for GPA, I'd actually have more stamina and youthful qualities than most of them. I think they mean well, and maybe are trying to reassure me that I'm not as abnormal as I think. But I thought they wanted to know how I was doing, so why can they not process my answer? I'm not complaining or making excuses, I'm trying to educate as to why I might not be as effective in getting things done as I was before. They are just not listening, period! Nor are they giving me any credit for having a realistic view of my life at this point.

End of rant! Any other pet peeves, here's your chance to share them, once again!

[HopeinTN]

While I'm a slightly younger 40, I get the same thing. Kind of like at the end of the work day, and after working 8 hours at the office (not to mention 45 minutes of travel to work and back and that as soon as I get home I'm online and working again), a co-worker will say "are you going home already"? Mind you, this is at 4:45 pm and I have no set hours nor is she my boss. I smile and say "yep, some of us can manage our time wisely and get a lot done in a shorter amount of time, bless your heart and I hope you don't have to work late... have a great night".

Some people just don't get it. If it's not the GPA that is slowing us down, making us sick, taking our memory, words, laughter...then it's the treatment. It's not easy being me, or any of us right now, but guess what, it's worth it.

So yes, I'm with you. Some people!

[crackers]

the problem with this disease is that there are no outwardly obvious signs of it.we may walk a little slower due to fatigue or have put on a few pounds thanks to the steroids but to the outside world we look "well".i'm fed up with the comment "you're looking well" to which my reply is "looks can be deceiving".until this disease gets some publicity that perception will not go away.
john

[annekat]

Of course, people with lupus and MS and RA get the same thing.... and if people see them appearing to be OK, they may come to think those better-known diseases are not as debilitating as they thought. Until the patients do start to deteriorate visibly. With us, since it's rare and largely unheard of, if they see us "looking well", and they'll never remember the name of what we have, it's even easier to jump to the conclusion it's no big deal having GPA. I really resent that comment sometimes, too, though people don't mean to be offensive..... I find it patronizing and dismissive, as if by saying "you're looking well", they don't need to really be concerned or think about it any more.

I know I have heard of Vasculitis all my life, on the fringes of my consciousness, but it went in one ear and out the other, and I never knew what it was until I got it. If you add together all the people with some form of Vasculitis, you will get greater numbers than just those with GPA, and I guess that would be the first step to getting more publicity for our disease and the others. I'm sure that's a lot of what the Vasculitis Foundation is trying to do, not to mention fabulous people like Marta and her ideas, and more power to them!

[drz]

I have heard the same comments many listed here. I was lucky that I had some of the same symptoms fatigue, weight gain, lack of endurance, loss of hearing in one ear, neuropathy, kidney damage, from diabetes long before i had the GPA stuff. People with diabetes have the same complaints as no one thinks diabetes is a serious problem either--just take some insulin or pills and everything is OK so I was used to dealing with the comments and people not thinking I have any serious health issues. Of course GPA made things lot worse.

People know I was sick three years ago--three months in hospital and three months in nursing home and now I am living in an assisted living complex so now they often say to me "You are looking good". I used to say "Yes, for a dead man I look good." Many people heard I was dying and some thought I had died. Usually I now say something along the lines--"yes, I am doing a lot better now than two years ago and I am very glad to still be here on the white side of the snow".

If they seem to want more, I might acknowledge I have lot of damage and limitations from the GPA but then comment on I am trying to enjoy whatever life I have left to the best of my ability. I can list specific things I can now do again like I can get out of bed, can walk some without a cane, drive short distances, live by myself and enjoy some things again. And then I try switch the topic to how they are doing.

I think people mean well and are generally happy that I didn't die and that I have improved so much. Some people also have similar health issues or tragedies that they have not shared with others and there are many I wouldn't trade problems with even if I could. Many people are fearful too since I remind them of how fragile one's health can be and how quickly life circumstances can change to something not very good.

[annekat]

Maybe we should start a collection of snappy comebacks such as "for a dead man, I look good". Some of them are pretty funny in a gallows humor sort of way.

Drz, I think it's sad that you had all those Weggie-like symptoms with your diabetes since before you ever got GPA. And it's true we do tend to think of diabetes as a run-of-the-mill disease and maybe not a big deal. There are the two types and not everyone is in really bad shape, or they don't appear to be. You are a case in point of the seriousness of it, and boy did you get hit with a double whammy, having GPA, too. Definitely, a lot of education is in order about these diseases. I think kids should learn about them in school, in detail, and be tested on them! What a concept!

[pberggren1]

I hear ya Anne loud and clear. To be honest when I meet people like that now I just change the subject or walk away. It's not worth wasting the energy on people that will not show any sympathy.

[annekat]

I hear ya Anne loud and clear. To be honest when I meet people like that now I just change the subject or walk away. It's not worth wasting the energy on people that will not show any sympathy. I know what you mean. I guess I'm still giving them a break by thinking they are just ignorant and that's not their fault. However, I've noticed that dismissive attitude in society about other people's problems, whether health related or not, and it needs to be fixed. I still say, make the kids learn more about health issues and diseases in school, so they will better understand what their friends, neighbors, and family members are going through and prepare themselves for what they might experience some day.

[pberggren1]

You are right Anne. It comes down to the family unit being destroyed.

[Jennie]

Hi Everyone

One of my pet peeves is when someone asks "What's the name of that thing you have?" Especially when I've told them a number of times already. Not many people know that I have this so if I have shared this info it's because I think they would care enough to remember.

Jennie

[drz]

Hi Everyone

One of my pet peeves is when someone asks "What's the name of that thing you have?" Especially when I've told them a number of times already. Not many people know that I have this so if I have shared this info it's because I think they would care enough to remember.

Jennie

I now give them the abbreviation of GPA but that it is still hard to remember. It took me a while to learn to spell it so I don't fault them for not being able to remember the name. Most people can't even remember it is a type of Vasculitis even after you explain that to them or my complications caused by the disease. Some people seem able to remember the name of the illness while others don't, not sure what it means but I don't assume it is a lack of interest.

[Jennie]

Good point drz, and i would not expect acquaintances or friends I don't see often to remember. However, I expect more from immediate family and close friends.

[annekat]

Hi Everyone

One of my pet peeves is when someone asks "What's the name of that thing you have?" Especially when I've told them a number of times already. Not many people know that I have this so if I have shared this info it's because I think they would care enough to remember.

Jennie Yep, I'm with you. I guess that's one thing about using the new name GPA, it might be easier to remember, but not after you've told them what it stands for.... I'm thinking lately I should just say Vasculitis.... at least that word sort of rolls off the tongue, they may have heard it before, and they might remember it long enough to do a web search on it or look it up in the dictionary (what a concept!), and maybe even learn something. But I do think it's weird that so many people I consider friends haven't apparently even gone to the trouble of googling our disease..... that's what I usually do when I hear of someone I know with something serious. And I did it before getting GPA, too.

[annekat]

Good point drz, and i would not expect acquaintances or friends I don't see often to remember. However, I expect more from immediate family and close friends. I see I overlooked some additional posts before replying before. Yes, let's call it Vasculitis, and if they pursue it further, we can say GPA... then if they google Vasculitis they'll see GPA as one of the types. I too am dismayed when close family and friends don't make more of an effort. It makes me wonder if they'd even make any more effort if we had something they've heard of, like lupus or RA. Cancer, yeah, they'd make an effort. AI diseases not so much.

[Sangye]

I had a little sit-down talk with myself today about a few things and one of them was this very issue-- ie, feeling angry and hurt about people not "getting" what I'm going through.

When I look for validation and understanding outside of myself, it means I'm not giving it to myself. I always find that the very thing I want from others is something I'm not giving myself. For example, when I'm longing for compassion from others you can bet that I have none for myself. If I feel disrespected, I am surely being disrespectful towards myself. Other people are mirrors of our own minds.

This is something I learned in therapy and it has served me well. I just forgot to keep making it my habit and my old habit took over again. :rolleyes1:

[annekat]

Thanks for your valuable viewpoint, Sangye, and I agree with it for the most part.

I don't expect people to really "get" what I'm going through, but it would be nice if they would just listen, say, to my saying that it is not just old age that makes me loopy, or whatever, but I have another thing going on, too. But they would rather interpret it their way instead of listening and acknowledging what I say. I realize any discussion of illness may be awkward for them, and their tendency is to want to see things in the best light.... "you look good", etc. doesn't usually offend me as much as it may some others on here. If they are being patronizing, it is annoying, but I'm willing to cut them some breaks for being human. I can't possibly "get" some of the things that they are going through, either.

You are so right about us needing to give ourselves validation, and that how we react to others and what they say about us is a real indicator of how positively we view ourselves and how much respect we give ourselves. These are things to think about every day while out in the world! And we do need to remind ourselves often that we are responsible for how we feel.

[Col 23]

Ive given up, If someone asks me how I am, I usually respond with I've had a bad week, I broke 3 fingernails. So over it. I also find I get
more annoyed and have to really zip it when I taking more that 20mg of Pred. As if WG isnt bad enough they had to give it such a weird name.
Use humour!!!
Col 23

[renidrag]

I've had so many people tell me I look great I too have given up. Not one to complain I simply say that I am still on the right side of the grass.

[annekat]

Ive given up, If someone asks me how I am, I usually respond with I've had a bad week, I broke 3 fingernails. So over it. I also find I get
more annoyed and have to really zip it when I taking more that 20mg of Pred. As if WG isnt bad enough they had to give it such a weird name.
Use humour!!!
Col 23 Yeah, just quit saying Wegeners Granulomatosis... say GPA or Vasculitis and if they care enough to find out more, they can google it. And you are right, humor (US spelling) is important!

[drz]

I've had so many people tell me I look great I too have given up. Not one to complain I simply say that I am still on the right side of the grass.

I use this one a lot too. Now I reply "I am on the white side of the snow so all is good."

[mishb]

I have trouble telling people the exact conditions that I have.
I don't want to sound like one of those people that is all like......woe is me
I usually just say that I have Rheumatoid Arthritis and some other stuff.......but this then brings on the.......yeah, my hands hurt or; my feet are really sore today or; my knees are stuffed, sort of replies from the other person.
I feel for each one of these people and I will never be a ......you don't know what pain is or; oh really, type of person.
I have a lot more compassion for people and illnesses these days.

However, my main comment these days is ........I woke up this morning, and therefore, I am having a good day. :biggrin1:

[annekat]

Me, too, Michelle.... more compassion for any type of medical or other problems that people may have. So many of them are worse off than I. And no, they don't want to hear a list of symptoms; it goes in one ear and out the other. People do like to compare symptoms even if they have a totally different disease... it makes us feel more solidarity with each other and is way of saying "I understand" , even if they don't.

The main comment I find myself HAVING to make is "it's not a cold or anything contagious...." I have to say this at random times, in grocery stores, at the bank, in polite society, etc. and it does get a bit tiresome. But I feel it is important that they know that I'm not going to give TB, the flu, or something, to them, their kids, or their customers. Just have to trust that they will believe me....

Yes, each day that we wake up is usually a good day.

[HopeinTN]

My saying is "I'm above ground", and any day you can sat that is good enough for me!

[Col 23]

Hi Anne
Its the other way round they can give us infections but they don't want to hear that. How does everyone get around people wanting to hug
and kiss you everytime you go to a party. Im still working on that one.....
cheers Col23

[mishb]

Hi Anne
Its the other way round they can give us infections but they don't want to hear that. How does everyone get around people wanting to hug
and kiss you everytime you go to a party. Im still working on that one.....
cheers Col23

I'm the same Col23. Being an office manager, everytime a visitor comes in to the office, they want to shake hands.......arghh, I really try not to cringe in front of them (who knows where their hands have been, I know that they have just touched the lift buttons, but what before that)

I show the person in to a meeting room, offer them a hot or cold drink and then go to my desk and use the hand sanitiser before returning.
Then I have to do the handshake all over again when the person leaves.....arrghh.

I can also relate to them giving us infections. I wore a surgical mask on the flight over and back from Melbourne to the USA and thankfully did not pick up any bugs from those that were being coughed and sneezed around the cabin. Three family members got the flu.

I guess we just become a little "precious" and dilligent with our health

[annekat]

I go to a hospital annex for my WG appts. and should remember to "steal" a few surgical masks. They seem to have them in dispensers all over the place.

[Col 23]

Yes I have the masks and hand santitizer and am diligent an obsessive about washing hands. With close friends and family I can get around
reminding to wash thier hands after being to the shops and they are fully aware about not visiting when they have coughs and colds. however
I feel like we need big signs or wear a tee shirt that says IMMUNE SUPPRESSED BACK OFF. Lol. Such a fine line and where does it all end. I need to hug my little grandchildren. We have games like blowing kisses and catching them or pretending the kiss was so strong it nearly bowled them over.

Mmm another thought off that topic but still on it in away. I am flaring at the moment, lots of pain in joints, occasional blurred vision and painful lower back pain. Using Ibrophen (inflammatory) and Panadeine Forte. Fatigued and more so with these meds. However bloods not showing a rise in inflammation. Possibly due to Cyclophosamine lowering these levels. However its probably another weird thingy with this illness. Its not all about what you see. Going in on Friday for another infusion of Cyclophosamine so will talk to Rheumy then.

Despite all this I had a great day and was very happy. I'm still learning to scale back plans for the day depending on how I feel and that's okay. Mind wants to do do, but body sadly dragging behind, then its mind over matter. I think that's exhausting enough.

PS the public hospitals don't mind giving masks if you ask, here at least anyway.

Happy days for all.
cheers
Col 23

[annekat]

Oh, the masks are available free here, too, in dispensers on the wall throughout the hospital. When I said "steal", I think I meant take a couple more than one, or do it at multiple locations. The mask bandit. Seriously, I would not do this a lot, although I imagine there may be people who do.

Will write more later, am in a hurry.

[Col 23]

LOL. Take all the masks you need.Self protection!!!!!.
Col23