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...
My spouse has RA and we're new to the whole thing, recently got Dx in August? I put a question mark there because the symptoms started back in March, perhaps February. They started taking medication in August of Metho, Prednisone, Folate, and many other supplements. We're both deaf. It has been noticeable how it really affects them, myself and us. Pixies, it’s what we call the pain, are always around. We use our hands for communication, to touch each other and for many other ways. When the days, or nights, are so bad, our patience gets thin because they are not able to fingerspell some words due to the pixies having a party.
I don’t know how others feel like, those with RA or supporting those with RA, but I am annoyed and I just want a week, a week of no pain so we can truly enjoy a conversation without being misunderstood, to love each other without worry, to be able take walks without the joints locking up or popping.
What is your advice in managing one’s frustration?
I really feel for you. My work involves being at my computers for long hours. I remember how, in the early stages of the disease and the meds hadn't kicked in yet, my fingers were locked, I could barely move the mouse or use the keyboard. So I remember how it was.
The first year is the hardest. It DOES and WILL get easier.
For the time being you need to find other ways of communicating....just until the meds kick in. I expect that once they do, you'll be able to sign and touch as you used to. [I use my mouse and keyboard like a champ again.]
A good support system is so important. Beware - some friends won't understand and might think you have the run of the mill "old age" arthritis. It'll be up to you to help educate them.
Would a small white board with dry erase markers help for the time being? It might be easier to hold a thick marker. Inconvenient, but it's something.
You'll think this is crazy......but....... Go to a toy store and buy a stuffed animal for each of you. Agree that you get the [e.g.] cat and he gets the [e.g.] dog. Carry it around at home. When you want to cuddle HIM....cuddle the cat you're holding. He does the same with the dog he's holding when he really wants to cuddle you. It's symbolic.....and seeing him cuddling the dog he's holding is symbolic of him caressing you. It can be powerful.
I am not clear on one thing: it's just your spouse who has the RA, right? [Of course, it affects the whole family.]
Come here to vent, ask questions.....we've got a lot of experience to share.
Lynn
And yes, its my spouse who has RA.
they also have a job that works with computers too. i figure that as soon as we figure out what medication would work with their body, things would definitely look up.
(and Team DS, if you're reading this, enlarging the text box would be awesome to ensure the information we type is correct.)
I just learned something today, too! Of course, RA would really interfere with a deaf person being able to communicate. I never thought of it before. I appreciate you posting about this!
But, as Lynn says, the first year is the hardest. He may need more than just the combo he is on. Esp. Because prednisone is not supposed to be for long term use, it doesn't stop the deformities, and the side effects can be bad.
As I always say, push the doctor for a biologic to add to the mthx, if it doesn't help enough. I waited 7 long years before I complained, and then went on a 100% combo for 5 years! It is possible.
Welcome to the group!