Irritating , annoying comments about chronic pain .
Posted , 10 users are following.
Don’t you hate it when the able-bodied try to encourage you with cliches that no longer apply to chronic pain patients?
The one that irritates me most is, “If you can dream it, you can do it!”. or, "the power of positive thinking" ... Here's one of my favorites
just keep moving and be "Mindful" of your tolerances.
It makes me want to reply, “Really? I’m dreaming that you would feel my pain”.
What at are some of the irritating response you receive from those who do not suffer from chronic pain? And what do you tell them?
4 likes, 369 replies
hope4cure
Posted
Today this wonky site won't let me post to individuals so hope this works.
I went to the grocery store today. A all day exhausting experience who would have thought.
T remember shopping for my mom all the time now I get why.
Today most of the peeps at the store were very helpful. Especially when they see me rolling down the isle in my cart. I love those things. Just think the baskets are too low.
I can't reach something someone helps me all the time. Even load my groceries in the car.
My hands are frozen so my fingers don't work to well. The cashier ripped the coins out of my hand to get the change needed and I yelled ouch and everyone looked at her and she apologized. Sometime it's just a matter of lack of education or ignorance when others are impatient.
There are also a lot of very kind and helpful gentle peeps that never question just want to help.
Hope xxxx
hope4cure
Posted
So my bad back hips knees have had it for today! Just grateful for all you that make me laugh! Needed that!
Thanks
Hope xxxx
gloria55119 hope4cure
Posted
I learned early on...never to shake hands with anyone...so I decided to do what the younguns do...and offer a small punch like greeting with my hand...it doesn't hurt so much...I'm thinking of asking the manager of the supermarket to free up one of the staff for me once every two weeks for an hour or so...as a "pusher"...Good customer service....and maybe the news might get around that this supermarket is the best for customer relations amongst other things. Better change the "job description" word tho'..in my day "pushers " meant something quite unsavoury....what do you all think...I could hang a sign round my neck..." Pusher wanted".....lol...
hope4cure gloria55119
Posted
ihavenonickname gloria55119
Posted
Indigoods hope4cure
Posted
Yeah, I get them as well. I guess some or most mean well, but it still gets annoying. Another thing I have noticed, when you get a disease like this- you find out who your real friends are. One of my best friends for over 20 years lives 10min. away from me. Since I've been what I would call really sick, hasn't spoken to me once. I have been on methotexate(chemotherapy, I know not like a cancer patient would be) for over 6 months. Not one call, hey how's it going. Nothing. Thanks man, when you were in jail for being stupid( not what i would call a criminal just dumb stuff). I stopped by your Mom's house and carried groceries in for her. I babysat your brother when he went through detox. Not one- How are you? No wonder depression and social issues are a problem for people like us. He was on of the people I could have used some support from. oh well-movin' on!!
ihavenonickname Indigoods
Posted
Move on, Hope is a great friend, look for Gloria in Bali, she will keep you in stitches!
Me, I gotta figure out which four inch heels I wanna wear this weekend. an advantage of being a roller.
Welcome to our wee group!
judith
65, 54 with juvenile rheumatoid
on Rituximab infusions
gloria55119 Indigoods
Posted
Hey...why not throw a small disabled party for those who have ignored you for so long...Invite the ones most likely to benefit from seeing and learning what AS is about. On the invitation..state that your condition, although serious is NOT contageous...and you'd like to re ignite your friendships with em all....Then you'll see who really matters....eh...
My son died from AIDS many years ago and I lost all my so called friends.....the world is full of Bu.. sh..Lets do something positive to heal those who need it more than we do....their minds that is....Hugs and love..Gloria
Indigoods ihavenonickname
Posted
Indigoods gloria55119
Posted
ihavenonickname Indigoods
Posted
hope4cure Indigoods
Posted
Heeling blessing sent ur way.
hope4cure ihavenonickname
Posted
Rituximab is a monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells.
i hope you are well and doing better on this drug.
Take care are and keep posting.
ihavenonickname hope4cure
Posted
ey Hope,
Wow, you are up on meds!
So another lesson here is that arthritis morphs. This is why we have so many biologics.
Enbrel eas the first...mid nineties ..a TNF...tumor necrosis factor
Humira is also a TNF
So for those of you who respond to either Enbrel or Humira, we know your arthritis is TNF driven.
Look at Hope's review of Rituxan AKA Rituximab . it is a mono (1) clonal (clone) anti (against) body which attacks the protein named CD20. CD20 is found primarily on the B cells surface of the immune system. So now we know my arthritis is CD20 driven. This explains why Enbrel and Humira will not be effective against my arthritis.. .TNF versus CD20
While one can self inject several different arthritis drugs, Rituximab is an all out infusion.
I have a BARD power port placed under the skin just above my right breast. The line from it empties into my right jugular vein. This port is used for all blood tests as well as for IV drugs. That means I can not have blood drawn at the doc's office. I have to go to an infusion center located within a hospital
I had a 1000 mg infusion last week and the next one is Nov 2. You take antiadverse reaction medications the night before, and the morning of. At the infusion center they will run in Solumedrol as an additional protection against adverse reaction. The entire process requires you sit in a chair for 7-9 hours.
Stay cheerful, be positive, laugh a lot, shine kindness
warm regards
judith
Indigoods hope4cure
Posted
No joke!
Indigoods hope4cure
Posted
Funny how many things the metho. is good for isn't it. Pretty sure it is actually helping, no major side effects-so far(fingers crossed). Thanks, for the Blessing, right back at ya.
Indigoods ihavenonickname
Posted
Judith, after reading what you go thru, I'm like holy s*%$. Then to hear you talk the way you do, if your not the definition of inspiration, I have no idea what is!!
ihavenonickname Indigoods
Posted
You kind, thoughtful words bring tears to my eyes. Thank you, thank you so very much. Indeed, it is an honor to be thoyght of as inspirational.
warm hugs
judith
Indigoods ihavenonickname
Posted
Anytime, Judith. Thanks for being there, or here I should say. Also hats off to hope, kay and gloria. I had no idea this whole forum thing would help as much as it has. The 4 of you have helped my perspective soooo much.
Feel like a different person, I was in a really dark place for some time. Now it's not so fuzzy around here!!
gloria55119 Indigoods
Posted
You are most welcome to our forum cuddles....we might need you one day..if we're feeling low...it happens on this roller coaster ride. BTW...I found a site that has helped me to gently excersize my fingers so they don't cease up altogether.. Don't laugh but it's an adult colouring in site...with flowers, animals, and all manner of things..I bought myself a set of crayons and texters...and I'm off on an art trip now....just sitting by myself..it's a sort of stress buster. Very theraputic...just type in " free colouring in pages".....it's a wizz....print it out and off you go...Hugs..G
ihavenonickname gloria55119
Posted
why do the kiddies get a cokoring book for $2.00 and we have to pay more...
Ladies, hold on to your panty hose...today me auto insurer sent me a Happy 65 Birthday refund check for $52.00 and reduced the insurance by $105.00 per year...should I frsme the check or cash it...like to have fallen over I was so shocked
toodles
judith
gloria55119 ihavenonickname
Posted
Congratulations on your "win"...spend on something nice....like perfume or chocoloates...or flowers or seeds for the garden ( theraputic ) I would ..Re the colouring pages...they are free on the "net"...don't pay $10 when you can get em free....just buy the crayons...Good luck.
Indigoods gloria55119
Posted
gloria55119 Indigoods
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Feeling low now...see my last post...My boisterous Rottweiler jumped on me...just playing...but she's twisted my right knee....send me a hug please.
ihavenonickname gloria55119
Posted
hug Hug HUg HUG warm hug warmer hug OUCH!!!
So sorry, perhaps a heating pad with elevation will help Ice too
Hey back to the golf cart...I think you should consider a webbed wing suit...you run right off the side of a cliff and fly!
I have been thinking...about your ape swinging...how about a stool ..A wee one step...that is how I get into trucks
Sitting here in hospital all day having my Rituximab infusion...boring
Blood pressure time
Get better soon!
warm hugs
judith
gloria55119 ihavenonickname
Posted
Hiya Judith......how about a bungee jump from the top of the mountain....Actually I need the dog whisperer here pronto...The poor dog doesn't get enough contact with her Mum and she gets too silly with playing....gotta get Cesar Milan eh...The knee cap has shifted...so it's painful...anyway it will take my mind off the other bits that hurt eh...
Hugs and love back.....lots of em
Indigoods gloria55119
Posted
And if I fogot to send the hug. I'ts on it's way to you now.
Indigoods
Posted
Goodness, my grammer. Try that again.
IF I FORGOT TO SEND A HUG, IT'S ON IT'S WAY TO YOU NOW
ihavenonickname Indigoods
Posted
I have lots if crayons, even those wee felt markers. If we could convince this site to post out colorings maybe we could raise funds for charity
Go Chicago Cubs!!!!!! won the world series!
gloria55119 Indigoods
Posted
Wow...you give amazing hugs....I got goose bumps. I don't get hugged enough...Balinese people are generally not huggers...they don't show affection in public...and my teenage adopted daughter seems to given hugs up...18 going on 25...My doctor is coming tomorrow so I'll get an other hug from her...she's a good hugger..like you.
gloria55119 ihavenonickname
Posted
Hey...that's a great idea...gives us all something good to focus on. Could make nice Christmas cards or calenders. BTW...there is also a site for wax crayon art too....you just melt the crayons and let them dribble down the page using a hair dryer for heat....Picasso style...great for those of us who have trouble using our hands. OK over to you for ideas....you've been nominated the Art group co-ordinator....he..he...
Indigoods gloria55119
Posted
ihavenonickname gloria55119
Posted
I have had my Sunday school class do this! You shave the crayons, arrange the shavings on a piece of waxed paper, place a second piece of wax paper on top...and iron it!
Just takes a quick second...don't turn the iron too high.
gloria55119 ihavenonickname
Posted
Hiya...that's a new way of doing it....I'll try it when the day brings energy. On another site they peg the crayons at the top of the page and then aim the hairdryer at em...and they dribble wierd and wonderful patterns...very arty. Very Zen...and I guess after the finished creation...one could iron over that and form a new design...trial and error and you don't need to struggle with your fingers as you do when painting or drawing...but oh what fun....Hugs G
hope4cure gloria55119
Posted
So sorry it took me so long to get back to you.
Offer my condolences for the loss of your son. There is no pain worse on this earth. How you doing since ? When we loose a child it like part of our hearts die with them. I feel for you. HIV is a horrible disease. My nephew died from it. He suffered thru a lot and he was the family comedian. I miss him terribly. He passed 8 years ago at 35 yrs old. Life can throw a terrible curve ball. It's a good time for reflection and prayer. Helped some but Time never really heels the scars always there.
Bless you sweet GLORIA.
gloria55119 hope4cure
Posted
Thank you so much...actually I lost two sons not far apart...one from AIDS and the other suicide. I am the family "rock" but underneath I dream about them all the time...and the pain never leaves me. But...turning grief around to do good for others helps me so much. If I was in good health I would do more but sadly that's not meant to be. I do what I can with what I have...I am blessed with friendship from this site..Thank you all.
hope4cure gloria55119
Posted
Gloria, you have lost 2 sons and that has so many consequences with coping, grieving & heeling .more than most parents cope with. I am so very sorry to hear this and wish you Peace and heeling.
As you mentioned helping others is the best form of therapy. It's great to have met you are on this forum . You have become a special friends. I cannot imagine the daily pain you cope with and from your posts your a very special and a heeling spirit for others.
Any time you need a friend you know where I am. You living in Bali seems so peaceful. I hope your doing well today and many prayers & blessings sent your way!
HOPE
ihavenonickname gloria55119
Posted
really big warm hugs
judith
ihavenonickname Indigoods
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isn't that something...my parents didn't know anything either!
chuckle
hope4cure ihavenonickname
Posted
Rituximub says its fir MS. I hope you don't have MS.
INFUSIONS UGH!
ihavenonickname Indigoods
Posted
It surely hurts...a previous friend said, what's with the wheelchair? And what is it...people think that because you sit in a wheelchair that you are a blooming idiot! I have said, my body's crippled, not my brain! And now that my hair is greying or is it graying...they treat me like I am addled! I will take a kind heart, a giving spirit over a gorgeous body everyday cause I can be hammered and screwed back together while there is no cure for that elevator that doesn't go all the way up.
just saying...
gloria55119 ihavenonickname
Posted
Geez Judith...I know what you mean..I was being wheeled round the supermarket by my daughter and we bumped into an old friend who we hadn't see in ages..The first thing he said...was...Whats going on you old faker....If I'd been able to I woulda bashed him...lol