Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
First, I don't have Lupus but I know there are some on this forum that do.
But I have a reason for bringing it up.
I'm really starting to realize the importance of family support and educating them. I know they will never really understand, that's a given.
As my journey with RA goes on I start to understand when I need to slow down, take it easy or I've done just too much.
I am dying to sit my husband and daughter (who both have the attention span of a Gecko) and make them watch The Spoon Theory on Youtube actually spoken and read by Christine Miserandino. But my first thought is their attitude would be, "Hey. this is for Lupus not RA." I have to explain this is used for many with chronic Illnesses like RA as well and many many more.
I remember when I was first diagnosed we were watching TV and the news reported that Selena Gomez had checked herself into a rehab because she admitted to having Lupus he made a comment how horrible that was. I know the two diseases are both Rheumatic and have similarities but I think he still equates my RA as just arthritis.
Who also has Lupus with RA and how are they similar to you?
How did you explain or help your loved ones understand?
Plus I found this link and wow...can I relate. I know many of you seen it too. I printed it out....now to have the courage to get his attention and read it and have him watch the Spoon Theory. I don't want him to think I am looking for pity, just an understanding of the seriousness and when I say to him, "You and Hannah may be on your own for dinner this or that night." I want him to "get it"
Last Sunday I had such horrible fatigue from pushing myself too much over the weekend. Exhausted to the point I literally could not move. I was planted on the couch and I couldn't move. It was fatigue right to the bones. So far I've only had it that bad a handful of times....
https://rheumatoidarthritis.net/living/community-thoughts-wish-more-knew/
But I have a reason for bringing it up.
I'm really starting to realize the importance of family support and educating them. I know they will never really understand, that's a given.
As my journey with RA goes on I start to understand when I need to slow down, take it easy or I've done just too much.
I am dying to sit my husband and daughter (who both have the attention span of a Gecko) and make them watch The Spoon Theory on Youtube actually spoken and read by Christine Miserandino. But my first thought is their attitude would be, "Hey. this is for Lupus not RA." I have to explain this is used for many with chronic Illnesses like RA as well and many many more.
I remember when I was first diagnosed we were watching TV and the news reported that Selena Gomez had checked herself into a rehab because she admitted to having Lupus he made a comment how horrible that was. I know the two diseases are both Rheumatic and have similarities but I think he still equates my RA as just arthritis.
Who also has Lupus with RA and how are they similar to you?
How did you explain or help your loved ones understand?
Plus I found this link and wow...can I relate. I know many of you seen it too. I printed it out....now to have the courage to get his attention and read it and have him watch the Spoon Theory. I don't want him to think I am looking for pity, just an understanding of the seriousness and when I say to him, "You and Hannah may be on your own for dinner this or that night." I want him to "get it"
Last Sunday I had such horrible fatigue from pushing myself too much over the weekend. Exhausted to the point I literally could not move. I was planted on the couch and I couldn't move. It was fatigue right to the bones. So far I've only had it that bad a handful of times....
https://rheumatoidarthritis.net/living/community-thoughts-wish-more-knew/
My thought was that her JRA was in remission, and it could have been. Or perhaps her RA was not that severe. So I guess she isn't the beet example of this issue.
I know there is a lot of overlap between the auto-immune diseases, but in fact, there are also big differences. I do have some lupus like symptoms, and also some psoriatic symptoms. But I do not have either disease.
As for educating your family, I would maybe start with renaming the disease. Always refer to it as "Rheumatoid Disease." Or even better, "Systemic Rheumatoid Disease." That might help them realize it is not just about joints, but the whole body.
Take your hubby to your next appointment with your RD. I made that mistake a long time ago. I took my daughter, but she had already long since figured out how bad I was, at the age of 10. I finally took hubby at around 10 years into the disease. The same time as I had my stupid foot reconstruction. It did wake him up. He knows I am not lazy, and if I am tire and need a rest, or help around the house, he now does it. But it is a learning process.
I hope you can get them to watch the spoons video. And that they understand.
That's what I have been calling it. RD rather than RA. It's so much more.
I took him to my very first appointment and the doctor was just so matter of fact and quick....didn't do much. We are self employed and he could not afford to go. I can be gone for several hours at a time and he would miss the $$$ (that pays our insurance premiums) lol
I am crossing y fingers with the video. I am having a good day today. Feel like my old self. Hope it last a little while.