Comments on: Are You Talking About RA?

By: Susan

Susan — Sun, 14 Oct 2012 00:52:20 +0000

I have been diagnosed with RA since in my 30’s I remember the first time it attacked me. During that time the Doctors wasn’t sure what it was because it wasn’t ” in front of there eyes”. I finally went to New York Hospital and the RA Doctor did a blood tests and it was diagnosed positive RA factor.No medication was giving to me at that time. My RA started to get worse over the years especially on my hands and on my toes. Last month I had a terrible flare up on my hands and toes especially on my left side. I told my sister, you don’t know when your going to get it and how your going to get it.

I’m on a medication for it but it did the damage what it was looking to do. I noticed a huge change in my hands, the way it feels when I’m doing something. After everything I had to struggle with in live because of my Disabilities, and me being on 9/11. This is another struggle for me to deal with. It get’s frustrating. Work seems to get harder for me to do. I’m looking on applying for Disability witch I have tried to avoid all my life. I’m 49yrs. old now. In Dec. I have to see my RA Doctor and see what happens from there. People do need to talk more about this. No one in my family doesn’t understands it until It happens to them. Which I hope it doesn’t because it’s hereditary.

Take Care everyone. My hands are bothering me from typing.

By: MissyB

MissyB — Fri, 14 Sep 2012 18:50:34 +0000

I’ve not had luck with ‘sharing’. I’ve lost some freinds, as it seems they are too uncomfortable with my illness? My family is supportive, but they don’t ask me any questions? I don’t think they realize the impact of this RA, and the toll it takes on me somethimes, physically, emotionally. Sometimes people forget that i have RA (wish i could) and i have to explain why i can’t do something. I try to be informative about this, without throwing it in anyone’s face. But for the life of me, why don’t people ask questions? It’s obvious they don’t know anything about it, so why don’t they ask? I’ve always been a talkative and open, easy to talk to person. People have always opened up to me about their problems, as i’m a good listener. But now i feel invisable, abandoned, overlooked…alone. So, who do i share with except strangers online that ‘get me’ more than those who know me in real life? so, other than online, i’ve stopped talking. I don’t know, it’s been 6 months since the onset for me. the longest six months of my life so far between pain, flare, meds adjusting. Maybe in another 6 months talking (to real life people) will be easier?

By: Jo

Jo — Mon, 06 Aug 2012 18:38:00 +0000

Its ok sharing with people that have it, I find people around me that dont have it, do not realise what I am going through. I am sick of being told to stay positive, it is all in your mind. Have you taken your medication. Even the consultant said go to the gym. I cant even slice a piece of bread or get up of the floor. Tell me does it get better or is this it. Having a really bad weekneed some one with the illness to talk to.

By: Kate

Kate — Fri, 22 Jun 2012 22:03:05 +0000

I shared with my parents and grandparents (the people closes to me) what the pain is like and the fatigue and spammed their email addresses with links about RA that I found helpful or would like them to read. However, I feel as alone as I’ve ever felt. I don’t have friends, and I really do need the support of people closest to my heart – my family. I’ve found them to be insensitive, especially my mother. She would say “why don’t you wash the pans in the morning??? Why aren’t you doing anything???” and my grandparents say “so what now? get over it, stop thinking about it, and move on!” and if my closest people can’t support me, who the hell can? It’s the emotional part I am missing, not so much financial. They help me out financially occasionally, however they don’t seem to realize (although I’ve done my best to explain) that I need simple compassion. Just one of them to say “I’m sorry…. Let me know if I can do something for you to relieve your pain” instead of criticizing that I am making things up not having a confirmed diagnosis, and besides, I’m 26, how can I have RA? People are in denial until they get the disease themselves

By: Linda Basta

Linda Basta — Sun, 11 Dec 2011 23:55:22 +0000

Thanks for all your posts. You do encourage me