dealing with families understanding our illness

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yalinda
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Date Joined May 2006
Total Posts : 1179
   Posted 6/5/2007 7:07 PM (GMT -7)   
seems lately there is a concern on how our families are handling our illness.  from what i am reading, and i may be wrong, we are meant to feel like it is our fault.  i think we all know this is not an easy thing for us to deal with daily.  guilt is the last emotion we need to feel.  lets face it that author , who i forget his name, wrote a great book about the stages of emotions.  whether divorce, death or illness we and our families go through these emotions.  i know i have been there oh denial  ... my friend  he still shows up and depression sometimes is closely behind.  lately i been visiting with anger and i think our families feel this frustration the greatest.  many of us moms - sry bear, lets face it  we are the stapple of our families and try to do it all.... we no longer can and the burden fall on the less nurturing hubbies who dont multi task as well as us moms do.    i dont think anyone in life ever accepts it.  i see it at work daily the people i help- dealing with the day to day but never saying heck thank goodess i am disabled now!  whoohooo !   
i guess our families go through the same emotions only we focus on us and they on them.  really no different. 
recently 2 good friends were going through marital problems and all i heard was the negatives all the time..... as a friend i finally said there must be something positive about ur hubby?  focus and build on that.  now i am no counselor but both couples since are on the mend focusing on the positive things in their lives. 
so this is a deep post ~ for me hw is my venting source. i b**** and moan here and feel i can.  we are all friends in the same boat.  from different parts of the world.  really awesome if you think of it.  i am so thankful i can vent here.  so here it is a venting post how we deal with our arthritis limitations and families or friends. 
me i smile and hold it all in...... probably not a good idea but for me it works 
 hw is my venting source.  hugs to all   yalinda

The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 6/6/2007 1:43 AM (GMT -7)   
You just might have known I would respond to you on this one Yally. You are 100% right about the staple support and the first course of crisis response and the multi-tasking but you allso left out you as women/mothers/nurturers see thins through different eyes. I KNOW that I do more than most men I know around the house/cave/wherever and that I have a different view on life than most men, but for mommy bear it is still not enough. That is not a criticism of her, she just sees things as a woman that is in a way very different from the way I see things. Because of the trauma of the cubs birth she has a far more irrational approach to cubs ailments/illnesses/injuries to the point where i almost have to be unnaturally laidback to counterbalance it. I come across as relatively lackadaisical but am becoming more intense as I get older and the fact I have pd isn't helping things.
The way the bear family deal with my OA and PD is by pretending it isn't there as much as they can. It's not denial but a coping mechanism to allow them to carry on 'normally' whatever that may be. Mommy baer is a drug/alcohol counsellor but can be the hardest person to talk to about personal issues becaus she is too close and finds it hard to switch off the counsellor button. Again, not a criticism.
 
I have had counselling for the after efects of a train crash in 96 for my behaviour changes and that allowed me to open up on all the issues I had stored up and locked away unresolved over the years and I tried not to allow them to build up again and put my family through the problems of dad washing clothes in the toilet, putting the dishes away in the garbage bin, lol at the time. tongue
 
So I dounderstand in some small way what you are talking about but don't tell everybody Yally, us men have afacade to keep up. yeah Doesn't do the bear image too much good if he's nothing but a softy underneath LOL. tongue
 
 
Barb me again soon, the masochist in me misses the poking witht the stich.
stay well yal.
the bear

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 6/6/2007 7:33 AM (GMT -7)   
Ah, a venting thread.. :) You guys are right, guys do look at things differently.. Not wrong, but different that women do.. and that at times can cause heartache and discontent.. When hubby and I go through a period like this, I try to explain to him my side of why I feel the way I do.. And then usually I get "Oh, I didn't think of it like that..." and vice versa..

Lately I have been having "issues" with my ex.. and it's all 'cause we see things differently.. same as stated above.. but trying to keep the lines of communication open, can be trying.. :)

Great thread Yalinda.. I'm sure there will be more posting soon.. :)
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 6/6/2007 8:28 AM (GMT -7)   
You bring up good points and for the most part hubby has drilled it into the kids' heads when I am having a bad flare etc, although I try my best not to mention when I am hurting because I hate to sound like a broken record, but I just don't have the energy that I did before and this week the MTX just didn't work like it did before ugh and I feel like at this point it should all be under control. My inlaws don't understand because I'm 36 years old, and I have arthritis are you kidding? lol

Oh Ducky...yeah those exes tend to hang around for a few years don't they? lol I have done the math and I am stuck with mine for 10 more years....we can be civil, even cordial now but thats about it!

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 6/6/2007 2:51 PM (GMT -7)   
I tried to explain my condition to my husband last week. He doesn't understand the fatigue that I feel. I try to get to bed at 9-10 and get up at 515 to get ready for work. He says that I am getting 7-8 hrs. sleep that should be enough. He doesn't understand that I don't sleep very restfully due to pain. I never know when I should of took a sleeping pill so I take one 2-3 times per week. He doesn't understand about the fatigue that goes along with my condition. I guess I need to have my Rheumy write a note explaining it. I think he still wouldn't understand. I am also having a hard time dealing with it. I am lucky that my children have grown and I don't have to care for them still. I don't know how you moms do it.
Nancy

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 6/6/2007 4:08 PM (GMT -7)   
Thank YOU yalinda! This is absolutely perfect & well needed.
Bear, you are a gem...thank you so much for everything you do here, it's truly invaluable.
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm; Diazepam 5mg; Rozerem 8mg; Diclofenac; Celebrex; Percogesic; Dilaudid 4mg. 


yalinda
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Date Joined May 2006
Total Posts : 1179
   Posted 6/6/2007 4:26 PM (GMT -7)   
well i started the thread without a real vent of my own so now i am gonna vent!!!!!!

me oh everyone is pretty ok with my downtime. i guess my hubby and kids are not real confrontational so i dont get greif. but in the same token i dont get help either! my beef....... if someone by a slim chance does do something aroud the house without my asking i get an i am ungreatful i didnt thank them for doing my job attitiude!!!!!! who the h*** ever thanks me!!!!!! ok sry vent but my family knows i have pain fatigue etc and they say they are sorry but no one ever helps!!!!! i have teenagers that i still wait on hand and foot.
i have always done laundry cook clean work garden oh song break..... i fry up the bacon cook it up in the pan and never let him forget he's a man but! i just want to quit! i cant make it through work and home -and dangit work pays the bills! so yes i get no verbal abuse but i am used and if they really understoodthey would help. ok hubby helps more than ever did but i think he resents having to do house work.
20 years of me doing it all is a major adjustment for my family....... and me, cuz u know they cant do it right lol

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 6/6/2007 4:31 PM (GMT -7)   
I get aggrivated with my hubby sometimes too 'cause he also doesn't understand the pain/fatigue... I never usually complain about much.. if I did, lord I'd be whining all the time.. so when I do say something, it's bad.. and nothing makes me more mad than him looking at me like, WHAT?

Most of the time I can stop and take a step back and say, he doesn't understand 'cause he doesn't go through this.. and I try to help him understand.. sometimes he is receptive, but he does tend to forget.. 'cause I don't complain often.. and then I'm even angrier.. it's a vicious cycle..

I try to put myself in their shoes as much as I can.. to try and see it how he does.. is hard when you are in pain though, I know.. I snapped at hubby tonight.. :( didn't mean to, but having a rough go of it right now, lots of issues with work, kids, ex's and my own health.. I didn't need his crap too.. and I let him have it.. then felt like a total butthead, 'cause it's not his fault.. and I know that, but I lashed out.. he understands, I think.. :) I apologized, and explained to him why I was angry, and everything seems to be ok now...

Hope you are all well.. hang in there.. thanks for doing this again Yalinda.. you're the best!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 6/10/2007 8:47 AM (GMT -7)   
Hi guys,
Thanks for this thread, Yalinda, been reading what you have all been
writing, and it's helping me alot more than you know. I'm trying to cope with all of the changes myself, not sure how to do that some days, let alone try and get across to the family why it's not "business as usual" around here, and that I could use a little extra help. my hubby has been phenonemal, he always seems to be at his best in a crisis, but I'm afraid that as time goes on, he'll get a little tired of it all. As I've said before, we've been together a long time, and our kids are older, so things are a little different for us. I think I'm having a harder time accepting that I can't do the things I used to do....have always been a sun-up to sun-down hard working, keep busy person. Kids, house, yard, cooking, you name it. I broke down crying like a baby in a Chick-filet parking lot because I couldn't open a ketsup packet for heaven's sake. Felt so incredibly stupid!!! Crying over ketsup!!
I think what I am learning so far, is that the same people I could count on in the past are the same people who are here for me now. Certain members of my family are the concerned, caring type, others just aren't. If I need an extra boost, those aren't the ones I call. Just don't think some people are wired to be conpassionate, they are too caught up in their own lives, which is ok, it's just who they are. My support system is really the same as it's always been, except now I have all of you, too.
Teenagers...boy they are fun, aren't they. I couldn't get much help out of them even under "normal" circumstances...I think it's really hard to get through to them at all Yalinda..and yes, we must be incredibly grateful for what ever crumbs they happen to throw our way. Frustrating little buggers, sometimes..but mine did become human again at some point.
Anyway, like I said, I think right now I'm most frustrated with myself..for me that's been the hardest part up to now. Wish I Knew how to get past that.
Take care everybody!
Jody

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/10/2007 11:36 AM (GMT -7)   
This morning my husband told me he thinks my MTX makes me moody...maybe it does because I feel grouchy and out of sorts and just generally feeling sorry for myself. I'm looking at him and thinking well you would be too if your hips were on fire!! I just hurt...

Today we are shampooing our carpets..well my 13 year old and myself so we shall see!! husband is going to finish the yard work..I really need his help with the carpets today since my oldest is visiting grandparents, he is an awesome carpet cleaner!! but is not here to help.

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 6/10/2007 7:48 PM (GMT -7)   
mom.... are u still on prednisone? that is a moody pill.

i too need to clean carpets and have been dreading the task! gonna still wait til july as i am having the grad party mid july and if i do sooner they will probably just get dirty again :P

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/11/2007 8:31 AM (GMT -7)   
Hi Yalinda..No I haven't been taking any prednisone, but sheesh I am in so much pain, I do have one refill and I am seriously considering getting it because now that I am down to one measly plaquenil, it isn't helping! If it isn't the mtx, I don't know what is wrong with me then..who know huh?

A grad party? do you have a kiddo graduating?

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 6/11/2007 7:35 PM (GMT -7)   
yeppers....... hard to believe as i am only 29 lol!!!! real loud heeeeee isnt the internet the best! i can be 29 thin and shapely beautiful. when in truth the old grey mare she aint what she use to be lol

hope you feel better soon.......

The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 6/12/2007 4:20 AM (GMT -7)   
Sheeeeeiiiiiiit yally grey is good you better believe it, take it from me!!!!!!!!!!!! Beauty is in the eye of the beholder and iits only because we are too busy looking elsewhere that we cannot see what's in the mirror. The hell with the Lady of Shalot, she spent too long looking in the mirror in the first place. Erin bear paws and hugs to you I do hope that whatever it is passes quickly and with much less pain - no pain no pain no pain. I wrote asking mine to leave home but it made no difference but your pain sounds excruciating - c'mon people, team hug [[[[[[[[[[[[[[[[[[[[erin]]]]]]]]]]]]]]]]]]]]]]]]]]]]].
43-64 hike!
The Bear

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/12/2007 9:24 AM (GMT -7)   
Yalinda girl!! You mean you have a kiddo scooting out the door and you are only 29???????????? Well!!! Ha! Lets see..I'm 36, and when I finally get one out of the house (like he really is going to scoot right? ha ha) I will be the big 40!!! You young thing you!! Oh stop that!! I would love to be 29 again *sigh* :)

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 6/12/2007 9:25 PM (GMT -7)   
so would i! lol cause that is about how old i was when she was born! do ur math! :) ps i am not as old as bear teeheee .... me thinks? but i was in what maybe 6th grade when u were born?

The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 6/13/2007 2:15 AM (GMT -7)   
Okaay okay Yally see you're back on form. S***ers to the back of the class. You don't know how old I am - do you really? My last birthday there were so many candles the cake it collapsed under theweight!!!! I had a ration book after the war - rationing ended here in 1953 with sugar being te last item rationed. But well on the way to grey I am. I got to 40 and thought i had life cracked, no kids, no ties and by the time I was 41 I was a daddy bear and I lay the blame squarely at Goldilocks feet. That business with all the porrdige was just a ruse. The cub is now nearly 16 - August - so work it out. My pd is causing spasmodic coordination problems pasrticulary with the typing, my middle fingers on my right hand are fasst approaching useless and I haev to move my whole ahnd and drop it on the keys and hope for the best. Faster doing it left hhanded oops. What worries me is if the business with my hand is not pd. Once you have something serious wrong with you you either blame everything on it or lok for something else seriuos that you can also have. It's hard to be rational any more. My hand feels like the sensation you have when you've been lying on it and it is one step before pins and needles and one step after a local anaesthetic. Any feeds there peops?
I've been spending too long with you rheumies - it m ight be catching. well time to do a bit of work and travel up to Peterborough and back by tea time and tiffin. More tea vicar?

Stay well everybody

The Bear

yalinda
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Date Joined May 2006
Total Posts : 1179
   Posted 6/13/2007 5:16 AM (GMT -7)   
sry bear u break my rule of respecting my elders. i had u pegged for early 60's in my mind. u must be wiser than ur years lol really loud! so i didnt miss the big bday yet....... good maybe i'll come and celebrate?
my god son leaves for the UK in a few weeks. he is on a travel soccer team and is playing in scotland and ireland me thinks?
since we are on the family thread...... how does ur nearly 16 yer old deal with dads arthritis? i got one that age too! she is much more caring than my busy 18.

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 6/13/2007 7:20 AM (GMT -7)   
Okay Yalinda...yes I AM mathamatically challenged! and I was thinking wow she had one really young..doing the math on my fingers, but it wasn't any of my business, and you SAID you were 29 now lol hahahahha I guess I misread so the joke is on me :)

I also had bear pegged for an older cub but not quite in your 50's though. Oh well I just enjoy all of you anyways :)

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 6/13/2007 1:55 PM (GMT -7)   
hehehe never take me seriously ladies and gents! i guess i could have had her at 11? but i wasstill a nerd at 11. heck what am i saying according to my kidos i am still a nerd!

The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 6/14/2007 12:55 AM (GMT -7)   
Yo Yally, your godson is coming to the UK? A word of waning don't let him call Ireland the uk they can be very touchy about such things [I'm thrd generation Irish with some Welsh, English and wolfhound thrown in - not to mention Grizzly]. My email address is listed so if he is anywhere near London at any time then ask him to mail me and he can call by the big cave wherre the bear works for nuts, berries and ice cream.
As for the bear cub - like all 15 year olds going on 21 he lives in his own little bubble and calls me the crock and just accepts that his dad can no longer kick bals around with him like I did when he was smaller or help in the cricket nets or umpire his games like I used to. For the last five or six years I have had mobility problems and all his life he has been used to me going in to hospital for corrective surgery so it really is no big deal for him and he [and momy bear] treat me as if there is nothing the matter - I'm still daddy bear and still expected to do my share of the stuff around the house, washing, ironing, cleaning, unblocking the john and the drains, but am not very good with tidying up as I feel the house should look 'lived in'. Know what I mean 'arry?'
What is it with the censorious ***************'s they even ********* out parts of words so you haven't got a clue what was said or written. I know what got bleeped out and on its own is a bad word but as part of a much larger word its not. Another word for what got bleeped is sneerer or giggler or a combination of the two. That's why I use smeg - it doesn't exist and can mean what you want it to. Anyway off to COventry.
Stay well people
The Bear

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 6/14/2007 2:14 PM (GMT -7)   
Ok.. since this is the vent thread.. I need to yell............................................................................
AAAAAAAAAAAAAARRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHH

I am not allowed to say what I really want to.. but I assure you it would be quite colorful! I am not in a good mood today, and haven't been in a while.. what's wrong you say? Uhm, take your pick.. there is a long list.. but I just wanted to drop by here and yell.. thanks! :) :) :)


Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/15/2007 2:45 AM (GMT -7)   
Duck!!!!! {{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}
hmmm?....you could use one of those voodoo dolls.  i don't know...sounds like ya wanna pin someone!
Bear, you're a good pappa-Bear i can tell.
 
you know what i wanna know???
where the he** did all of my friends go?  seriously, have they dropped off of the earth? eyes eyes eyes i think so!
you all know the saying "You really find out who your friends are when you become ill."
darn right! mad mad
 
my best friend jenny of 21 years...she actually lives w/ her hubby about 60 walking steps from me!  AND I NEVER SEE HER!  i was maid of honor last year @ her wedding...and wouldn't ya know, i haven't seen her since!
i'm working on smoke signals/doves & messenger pigeons as my last resort. 
 
i am really happy that my joe is my best friend as well as my main squeeze.
 
the only person left from "pre-sick" is my one good buddy of 10 years who calls every day mostly...but here's the kicker...HE HAS KIDNEY FAILURE! so probably a lot of his "social friends" have jumped off the planet too.
 
anyone else the same?  from RA or AI Disease which may have you limited more than you were in the past...since not able to run with the pack...are once good friends scarce now?
 
smurf  again, {{{{{{{{{{Ducky hugs}}}}}}}}}}}  this too shall pass.
erin

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/15/2007 7:11 AM (GMT -7)   
Ducky???????????????? ((((((((((Hugs)))))))))))))

Since this is the VENTING thread....

This is Fathers Day weekend and the kiddos dad was supposed to come on the 29th of June to get them, but instead he quite his Montana job early and came this morning and picked them up...so yesterday two of the kiddos and I celebrated Fathers Day early for my husband (their step dad). My 13 year old baked a home made cake, made frosting, and my daughter decorated it, they made gifts, we got a card, and they decorated the house. We made dinner, it was great, wonderful. My oldest is down working at my in laws to help my father in law so he could not be here and he did not want to go with his dad. So anyway, fast forward, after endless washing, packing, getting the kids ready to go, since it was such short notice, I am exhausted. My husband is on the sofa and we are talking and he tells me he is "not happy" and that he is "tired of being a step dad".....um okay, we waited how many years to get married????? when I met him, I told him, I could not have any more children, blah blah blah, I wasn't hiding my children in a closet, he knew they had a dad, you get the idea. Finally we revisit the IVF and I tell him I am taking medication that CANCER PATIENTS USE and ITS NOT WORKING and I HURT!!!!!!! What about my flares???? We discussed adoption and how much it will cost and he said he will tell his mom that she will not see him much since he will be working an extra job. At this point he says he needs to DO something either get his Ph.D or have a child. Insert *eye roll* here.

This morning I have not slept..I'm tired and the kiddos left at 7am. Before they left, my little girl is so sweet...she is chattering away about something and keep in mind they call my husband DAD, so she is sitting on his lap chattering away, because she has been with him since she turned 3. I wanted to scream stop calling him THAT!!!!!

Today I feel sad and depressed. It seems to be that if he does not have a child of his own it will be a deal breaker, and the two of us are not enough, and THAT is a very sad thing. The very fact that he never really THOUGHT about my RA, about the meds I have to take, how much I hurt, that he keeps pushing me to do this, make me sad.

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 6/15/2007 10:02 AM (GMT -7)   
Oh Mom,
Sure wish there was something, anything I could say...I hurt for you!! It breaks my heart to read this. It is so hard to keep a family together under the best of circumstances, but throw all the other factors in and wow.....
you have my thoughts and prayers!
Jody
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