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Rheumatoid Arthritis
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Posted 8/21/2010 12:16 AM (GMT 0)
Someone finds out that you have Rheumatoid/Psoriatic arthritis, and ask "where?"

Anyone for a disease-name change?

Enjoy your weekend everybody :) x
Posted 8/21/2010 12:30 AM (GMT 0)
Jay,

This summer when I was trying to get into the new Rhuemy, someone I know overheard me on the phone(non of her buisness in the first place) She said "oh you have RA? Where in your toe, or your spine? I was told I have it in my pinky"..I thought are you kidding..you are something else. First in my buisness and second don't even know what you are talking about..some people are so dense. Have a good one.

Posted 8/21/2010 1:03 AM (GMT 0)
Rheumatoid arthritis in your pinky.... love it!

Some people empathetically tell me they have it in their knee... so frustrating!
Posted 8/21/2010 1:55 AM (GMT 0)
YES! Or someone will say- it's hell to get old isn't it?
Posted 8/21/2010 12:16 PM (GMT 0)
As for the name change I think it should be Rheumatoid Autoimmune Disease. The arthritis word throws people.
Posted 8/21/2010 1:26 PM (GMT 0)
Yes, that's what I tell to people - actually just started - saying it is autoimmune system disorder before I say Polyarthritis and problems with joints, pain. And try to explain but just to people who I trust and know that they will kind of understand. I am pretty closed person, I don't like to share with others my problems. I started new job in January this year when my desease started to explode and people from my department still don't have the clue what is wrong with me. After this Frday absence as I didn't look good on Thursday they started to ask questions and I think is time to give them some idea, I am not sure though I should tell my boss??? I hate using word Polyarthritis or RA .... I will probably go around, and around but will try to explain...
I understand it can be annoying - I've heard already before - "oh I have this rheumatoid pain in my knees too..' but some people don't understand that for me this pain means not able to walk or move my hand.
Posted 8/22/2010 10:11 PM (GMT 0)
You look fine, there's nothing wrong with you!

Have you tried physio?


........ ARGH
Posted 8/23/2010 4:41 AM (GMT 0)
Or the "you're too young to have RA!" I'm always blunt and say its most common between the ages of 25-50. It's an auto immune disease and are you thinking of osteoarthritis? Try to embarass them. I'm so over the sore fingers people or the words of advice, you just need to take this herb or try this diet because of Aunty Maureen ...
I'm afraid I'm a bit rude these days, my GP suggests I just thank them and move away.
golitho
Posted 8/23/2010 11:38 AM (GMT 0)
Love it, golitho, throw it back at them! Mental note, check.

B strong, your story could be my story. I also started a new job (March this year) and this all hit me, hard, only 3 months ago. And, ditto, only a very select few even know because, yes, I "look fine" (as Jay said).

Another vote for a name change here!
Posted 8/23/2010 2:39 PM (GMT 0)
Golitho, I love that! I have heard those before as well. Sometimes people just don't "get" it. What I find the most frustrating, is the fatigue. When our bodies are fighting inflammation, it causes fatigue and we are just plain tired! Even family doesn't get the fact that it is difficult to keep up with their energy levels and schedules.  So my "tired" is not the same as your tired simply because you didn't sleep well the night before shakehead

I also have a stomach disorder (gastroparesis) and I mentioned that I was getting tired of eating Malto-Meal because I can't eat regular oatmeal/cereal.  My dh says that he really enjoys Malto-Meal,(wondering why I was complaining?) and I told him of course because he can "choose" to eat it, or anything else he would like to eat.  I'm extremely limited on what I can eat/digest. Of course Malto-Meal is great if you don't have to eat it on a daily basis rolleyes So really, unless someone has one of our disorders, they truly cannot grasp it fully.

I know it can be so frustrating!!

Posted 8/23/2010 5:57 PM (GMT 0)
Love it- it's an autoimmune disease did you get it confused with osteoarthritis?

 

Posted 8/25/2010 6:35 PM (GMT 0)
I love that too! "Love it- it's an autoimmune disease did you get it confused with osteoarthritis?"
I say something like I have Rheumatoid Arthritis, and they say ya I have arthritis in my hands , or their knees, I just say" well I have it in EVERY JOINT YOU CAN POSSIBLY THINK OF and I HURT ALL THE TIME!" Some people it shuts up because how can they 'top' that?
I think a name change is good, people only link arthritis to old people. Well hello NOT all arthrtitis is for OLD people. Wake up sheesh.
anyway I have had my rant lol
have a great day. ((gentle hugs))
Posted 8/26/2010 12:04 AM (GMT 0)
If I would need to choose I would go with - AUTOIMMUNE SYSTEM DISORDER - ASD like that? :)

I talk to one girl from my department as she was the most concerned about me and I started to tell her what is wrong with me, that I have some chronic desease and sometimes I am in the horrible pain and my doc is trying to find the best meds for me. Her first question was - "is it like arthritis pain?" I was so supprised as she is 24, I didn't expect this. So I said - it is actually polyarthritis, multiple joints are involved. She said that she has friend with arthritis, she is 26 and she talked with her a lot about it. That was one of the best responses I had so far, as she knew actually a little about the desease and how hard it can be. I mean at least she had an idea, so I felt much better after throwing this out from myself to finaly someone from my colleagues:)

Main thing with people reactions to RA or other deseases is their knowledge, we can explain a lot, they will never feel it, but at least they could listen and read something about desease before they say something stupid!
Posted 9/9/2010 1:33 AM (GMT 0)
I love the "too young" comments. My nephew was 2 and another was mid teens. My Dad and I were 7.
My grandaughter 9 and the 5 year old is showing signs. You're never too young to develop it. I had times
in my early 20's where I would have a couple of days that hurt so bad I couldn't walk. In my early 30's I
had to lean on something to get up. I'm still hanging in there and I'll be 57 in April, still working an 8 hr.
day on concrete in a dishroom doing the jobs the 16 yr olds won't do.

As for the "where do you have it?" comments, for me it's more like where don't I have it. It's taken over most
of my body but I won't give in gracefully.

Nana Monster
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