Even after having this disease 17+ years I can't find words for people. Maybe I'm tired of saying the same things over and over like a broken record. 🎙🎙 Like most everyone on here, I'm in pain 24/7. It NEVER goes away or stops. The only thing that may change is the degree of pain, where it is at and movement. I tell people constantly I dont feel well and have to cancel. I know people are sick of hearing I NEVER feel well or I am not making it over AGAIN. But seriously... what am I supposed… read more
I have been telling my family that I have Rheumatoid arthritis disease. I have a sister-in-law who is a nurse so that helps, she was able to explain to my brother and her children what the disease is. My other brother and sister-in-law have asked questions about it and I have told them everything I know about it. It sank in to them when I left my niece's wedding reception early because I was exhausted from going to the party the night before and the wedding in the morning and going out to lunch with the group before the reception. But I tell people I have RA disease or Rheumatoid disease and I leave out the arthritis part of it.
Boy, the only thing say to you is be strong! All the people that you are tired of explaining too, no one will understand unless they have the painful joints,stiffness, aches and pains! Do whatever it is that helps you the most, and forget explaining to anyone!! Focus on helping yourself so you can remain being as positive as possible for the people you care about most!!
I agree that we are more misunderstood because it has arthritis in the name.
First off LiaVila, you're going on biologics. You're not exposed to viruses, it's an autoimmune disease and you're suceptible to catching things much easier than others. You need to keep up on your flu & pneumonia vaccines, especially if you work in health care. Stop worrying @ your treatment. There is a good article in the Q & A section on this site. It tells you @ each type of commonly used medications.
Back to people understanding this disease, you can only do what you can & let it go. But you also can't decline EVERY INVITATION just because you hurt. If you're asked to go rock climbing, that's one thing but to eat or to visit someone, work thru it!!!! Hate me if you want but you can't lay there & say " Oh, I hurt"! GO!!!! You don't have to stay long but go. Talk to them, let them know your limitations & work with it!!! Don't let this disease make you home bound. Don't let it define you. Rest when you can, do what you can & press on. Get up, dress up & show up!!! You WILL have pain to some degree for th rest of your life. Go while you can!!!
I've had RA for 10+ yrs & I know first hand how crippling it can be. My fingers & toes are deformed & it's already attacking my lungs. I qualify & know how you feel. Push through it. Push hard & show up. Cut back work if you can. Make adjustments but push through. Exercise even if it's only in a pool. You have to for your body & your sanity.
God bless us all.
Nichole I took a picture of this and sent it to everyonre. Worked for me . Could even send when canceling . Text text text.
RandyWhited I'm just like you!! There's no filter on my brain! If I think it it comes out of my mouth. I have no ability to lie. Sugarcoated is the best I can do. Some say it's part of my charm but.......
AND HERE IT COMES EVERYBODY; just keep moving & modify!! I didn't think I could quit working or make it on SSI but I modified my lifestyle & I'm doing it. I only help people (work) 3 days a week & if I'd quit smoking.............
But cut back if you can. I've looked into every agency that could help me live a comfortable life. I got on a HUD list & 8 yrs later, I live in a nice house. I get excellent health care. I thank God for every blessing he's bestowed upon me. It's amazing. But I've done all th footwork. I've been a warrior & advocate for my health care & I have a cutting edge Rheumy. But I kept demanding that best!! I'm in charge of my healthcare!!
But move. Take naps if you have to but get back up & do something. When I fix meals I sit to peel or dice. Sit when you can but move. I believe if I stop I'm done!!! I'm 62 and going down fighting.
God bless us all and I'll keep praying till there's a cure.
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