Arthritis Foundation Forum
Home   
Search
Welcome Guest ( Login | Register )
  
Recent Posts
   
Popular Topics

Home » RA Connect » Rheumatoid Arthritis - (RA Connect) » Letter to people without chronic pain
60 posts, Page 3 of 3
«««123

Letter to people without chronic pain Expand / Collapse
Rate Topic
Display Mode
Topic Options
Author
Message
Judy6
Posted Wednesday, March 04, 2009 9:22 PM


 

Group: Forum Members
Last Login: Wednesday, March 04, 2009 9:38 PM
Posts: 9, Visits: 2
I just read your post and it brought tears to my eyes. I look normal, act normal, and people seem surprised when I get up and hobble around the room. It's so hard to understand the constant pain, when its not something you can see. I fake it, walk thru the pain and try to look as normal as possible, don't want people to worry. But boy o boy does it hurt. It is the odd day to wake up and feel strange, and then realize the oddness is the absence of pain. This board is a great place to feel "normal" Thanks for the post.
Post #4187640
Top
chris 2
Posted Thursday, March 05, 2009 1:45 PM


 

Group: Forum Members
Last Login: Monday, October 12, 2009 10:00 AM
Posts: 1,059, Visits: 742
You're very welcome Judy.  We're all in the same boat here and sharing the pain, is what its all about.

Chris

Friends are just angels who have forgotten how to fly

Post #4187790
Top
Athena22
Posted Monday, March 09, 2009 2:45 PM


 

Group: Forum Members
Last Login: Monday, June 01, 2009 12:24 PM
Posts: 36, Visits: 4
PERFECT!  That was so well written.  That is exactly what it is like for us with RA!  I have eperienced all you have written there.  The one that gets me is, when someone calls me and I sound happy, they say, oh! you sound good, like I must be feeling good too!  I have said to them what you wrote, that if I sounded the way I actually felt all the time, I would sound terrible, and so I choose to sound happy.  I dont want to sound like I feel.   I also think people tend not to want to come over to my house very much, and we need that more.  I have also had to cancel last minute and people have gotten mad about it. Even my own Mom has been personally hurt by me not being able to go to every family event!  She does not get it, no matter how much info I send her.  I try to educate and I sure dont expect everyone to understand... since they really dont know. But, when I do send info and explain, I do appreciate those people who really try to get it... and they care.  My mom may never get it.  Oh well.  THanks!! 

PS would it be ok if I copied this to send to people?  If not, I understand. 

Post #4188442
Top
chris 2
Posted Monday, March 09, 2009 8:05 PM


 

Group: Forum Members
Last Login: Monday, October 12, 2009 10:00 AM
Posts: 1,059, Visits: 742
Athena,

Of course!  Please feel free to copy and send it to whoever you like.  This letter has helped so many to understand and finally get the message.  I expect it has already passed around this country several times and there are still those who just don't get it.

May God be with you and bless you my friend.

Chris

Friends are just angels who have forgotten how to fly

Post #4188480
Top
Athena22
Posted Monday, March 23, 2009 3:08 PM


 

Group: Forum Members
Last Login: Monday, June 01, 2009 12:24 PM
Posts: 36, Visits: 4
thank you.

I tried to post a comment on your page but I keep getting a black screen...

hope you are having a great day!

Post #4190782
Top
chris 2
Posted Tuesday, March 24, 2009 12:33 AM


 

Group: Forum Members
Last Login: Monday, October 12, 2009 10:00 AM
Posts: 1,059, Visits: 742
Hi Athena,

I don't know what's wrong with profiles or site mail.  When I tried to access yours, it said, "access not allowed".  Hopefully it will get straightened out soon.

Chris

Friends are just angels who have forgotten how to fly

Post #4190862
Top
blueyedchyck
Posted Sunday, June 28, 2009 6:56 PM


 

Group: Forum Members
Last Login: Sunday, June 28, 2009 6:44 PM
Posts: 3, Visits: 2
Thank You, 

And yes keep this up top!

Terry

Valentia, Ontario Canada

Post #4213360
Top
maria183
Posted Monday, August 10, 2009 2:47 PM


 

Group: Forum Members
Last Login: Wednesday, September 02, 2009 9:06 AM
Posts: 52, Visits: 58
Hi Chris , beautiful poem that you posted here, I had to print it out to post at work for all those people that have no idea what I go through...Kudos to you....
Post #4224378
Top
Meridith
Posted Monday, September 21, 2009 6:41 PM


 

Group: Forum Members
Last Login: Friday, November 13, 2009 11:39 PM
Posts: 36, Visits: 88
Thank you for posting this Chris. This is all new to me. I turned 40 on 8-14-09 and it all went down hill from there. The pain is unreal at times. All I hear is I wish I could help you. I wish I knew what to do. My 18 year old daughter is such a trooper. I just don't know what I would have done without her. It was like waking up one day and life is so called normal then the rug is ripped out from under you. Your writing really summed it up. Come over talk to me. Help me out. At this time in my life I really do not care where to put things away. Since standing for more then 10 minutes is really hard. I am so thankful to have found this group. I felt so alone. With the pain everyday all day it can be pretty hard to deal with. I just wanted to say thank you. I can relate with it all.
Post #4235820
Top
Erica Munro
Posted Friday, October 02, 2009 3:08 AM


 

Group: Forum Members
Last Login: Friday, October 02, 2009 3:04 AM
Posts: 1, Visits: 3
Wow I have been looking all day for a way to explain my "days" to my family and friends as most of the time they make me feel like I am faking this or it is all in my head.  Today my sister told me I can't blame everything on RA because I told her I wasn't feeling well.  I became upset off and hurt all at the same time.  How can she think I am making this up?  So I borrowed your letter and posted a note to all my friends and family on Facebook to try and help them understand what the life of an RA person is like.  Thank you so much!
Post #4239996
Top
Danielle Scholbrock
Posted Tuesday, October 13, 2009 3:14 AM


 

Group: Forum Members
Last Login: Thursday, November 19, 2009 2:03 PM
Posts: 3, Visits: 4
I LOVE the spoon theory! Use it all the time!
Post #4243577
Top
MaryFran
Posted Thursday, October 15, 2009 4:25 PM


 

Group: Forum Members
Last Login: Today @ 1:32 AM
Posts: 445, Visits: 720
Chris - I just read this letter and wish I had had it last year when my RA and related problems started! I remember my sister telling me I just needed to get up and walk around the neighborhood - I could barely walk through my house! I remember how angry she was when I said I could not go shopping or something with her because I felt so bad. I just did not have the words to explain to her what I was going through. Just like the letter says, I sometimes just broke down and cried trying to get her to understand. Things are much better for me this year but I still asked her to read the letter so that she will get it when I go through future flares and bad times with my RA - which is just to be expected as this awful disease works its way through our bodies. I will keep the letter and pull it out when necessary. Thanks so much for posting it!!!!

Mary H.

[font=Comic Sans MS] [size=2] Mary H.







Post #4245280
Top
Bodak
Posted Monday, October 26, 2009 8:30 PM


 

Group: Forum Members
Last Login: Thursday, February 25, 2010 12:46 AM
Posts: 80, Visits: 166
I have found that getting some of your closest friends to understand can be very difficult.
I have a wedding to shoot in a couple of weeks of which I have my friend to assist.
He has agreed, which is good, but, he wants me to stay over night at his place after the wedding.
I have told him that I will be very tired and wish to return home to my cave where I can try and wind down.

As quick as a flash he comes back and tells me that I am talking myself into being tired.
I think after three years of this disease I might know how I will be.

I will be tired and in no mood to have to concentrate on what others might be saying let alone have a few beers.
In one ear and out the other...

I've also tried my hand at explaining to people what it can be like with this disease.

----------------------------------------
Peace be with you always.
Stephen

Severe RA since October 06
Web Site - Photography
Post #4250064
Top
Laura Loop
Posted Monday, November 09, 2009 11:41 PM


 

Group: Forum Members
Last Login: Monday, November 09, 2009 11:31 PM
Posts: 1, Visits: 1
Thank you for posting this, Chris. I too find all too often that people don't understand the nature of chronic pain, how you learn to live with it, to disguise your demeanor so as not to disturb those around you, and how every day (sometimes every moment) can be dramatically different. And the ever-annoying suggestions from well-intentioned but clueless people about some simple food, exercise or OTC supplement that will magically take it all away because it worked for their second cousin or they read about it in a vegan recipe book. The worst part is the fatigue, and how pepole think you can actually "manage" it.... like a checking account. Little do they know that it manages you.
I hope you are having a good day. I hope you have the energy to do what you need to do today.
--Laura
RA for 10 years.
Post #4259917
Top
Donna Hays
Posted Thursday, November 26, 2009 2:33 PM


 

Group: Forum Members
Last Login: Tuesday, December 01, 2009 1:08 PM
Posts: 3, Visits: 14
Hi,
Thank you for posting this. My sister doesn't understand the process of the doctors needing time to find the right medications for me. She is tired of hearing about all the medical things and confusion that go with RA.

I found this at the right time.

Post #4270062
Top
vrod
Posted Wednesday, January 27, 2010 8:50 PM


 

Group: Forum Members
Last Login: Yesterday @ 10:35 PM
Posts: 39, Visits: 167
Hello Chris2 and to everyone who has read and replied. Like everyone, THIS is exactly how I feel all the time. THIS is what I want to tell people but always felt that it was not my place to impose my brutal honesty. I think it's because I really feel like they don't really care. They want to make themselves feel better by telling me that they will pray for me, try to encourage me, try to ignore that I am having bad days by telling me all the good ones that I did have, etc. I suppose they just don't understand, really don't understand, can't understand. I must make them understand.

I was diagnosed with Mixed Connective Tissue Disease (MCTD) in 2003 and this forum helped me. I have not been here for probably 5 years and now I'm back because I can't find another place where everyone is supportive, honest, and let's you whine in a thousand characters or more

I love THIS. I needed THIS. I will send THIS and I will not fear what kind of response I get, if I get any at all. I want THIS out there and no one can ever tell me again without knowing in the back of their mind after reading THIS, that "It's not that bad."

Thank you.
Vivian

Diagnosed in 2003. Mixed Connective Tissue Disease (MCTD): Rheumatoid Arthritis, Lupus (SLE), Sjorgen's and Raynaud's. Enbrel, Methotrexate, Plaquenil, Folic Acid, Protonix (GERD), Lisinopril (High Blood Pressure), Restasis (Dry eyes), Allegra-D, Singulair (Perennial Allergies/Chronic Sinusitis), Seasonique (Polycystic Ovarian Syndrome)
Post #4303442
Top
Courtney Boone
Posted Thursday, February 11, 2010 7:00 PM


 

Group: Forum Members
Last Login: Today @ 5:25 PM
Posts: 41, Visits: 82
Boy, does my family need to read this!!! Amazing! And thank you for writing this & allowing us to share it with others, as I am getting no support from my loved ones. They just don't get it. "just take some tylenol, you'll be fine...suck it up!" yeah right. Thank you thank you thank you!
Post #4318638
Top
susan mathis
Posted Thursday, February 25, 2010 9:25 PM


 

Group: Forum Members
Last Login: Thursday, February 25, 2010 9:17 PM
Posts: 1, Visits: 6
This statement really hit home for me. Its everything that I wanted to tell everyone and never could find the corredt words. I love this and totlaly understand chronic pain. I have been struggling with RA for over two years and have never had much relief. Finally someone understands.Thankyou.
Sue
Post #4327080
Top
Kelita
Posted Sunday, February 28, 2010 4:31 PM


 

Group: Forum Members
Last Login: Saturday, March 06, 2010 8:49 PM
Posts: 12, Visits: 21
I just love this! I had passed it out at work a year ago before I got laid off and have sent it to a few friends. It really hits home.
Post #4328508
Top
Jason Blum
Posted Today @ 5:25 PM


 

Group: Forum Members
Last Login: Today @ 5:37 PM
Posts: 4, Visits: 2
YOU DONT HAVE TO LIVE WITH THE PAIN , Read this

I have been active in sports and fitness my entire life… and still at age 53 I was jogging, working out and playing competitive racquetball 2 to 3 hours a night… several nights a week. This all came to a halt
seven years ago when an auto accident left me with 7 herniated discs... four in my neck and three in my lower back with a tear in the center of one of them. I couldn’t even walk or stand without excruciating pain
shooting through my buttocks and down my legs. There were times I had to crawl to the bathroom. Pain in my shoulders and hands sometimes kept me from falling asleep until the sun came up. The pain was
24/7. This affected my work and every part of my life. For more than 15 years I've loved playing guitar with my son... it broke my heart when I had to tell him "I'm sorry I can't play because I have too much pain
in my hands". I couldn't wash dishes or use the vacuum. It hurt to bend over and tie my shoes. It was painful to raise my arms over my head. As a result of inactivity I also gained over 50 lbs. When I first
heard about Panitrol I was skeptical but, I felt I had nothing to lose by trying it. On my fifth day I was walking without pain. Within a few weeks I was able to jog and play golf without pain and even get back
on the racquetball court. Pain and stiffness are also gone in my neck and shoulders. I’m also losing weight because I’m active again.
Now I’m Pain Free and Panitrol has given me a new lease on life! I’m telling everyone I know about Panitrol. I figure about a million people need this product.
Mike Kovach
Post #4338888
Top
« Prev Topic | Next Topic »

60 posts, Page 3 of 3
«««123

All times are GMT -5:00, Time now is 8:36pm


Execution: 0.998. 114 queries. Compression Disabled.
[  HOME |  MyPROFILE |  MyNEWS |  COMMUNITY |  RA CONNECT |  GROUPS |  FORUMS |  TAGS |  PHOTO GALLERY |  EVENTS |  INVITE |  FIND OTHERS  ]
© 2008 Arthritis Foundation.