Does it annoy you when...

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JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/20/2010 5:16 PM (GMT -7)   
Someone finds out that you have Rheumatoid/Psoriatic arthritis, and ask "where?"

Anyone for a disease-name change?

Enjoy your weekend everybody :) x
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Dihydrocodeine, Paracetamol, Diphenhydramide, and scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/20/2010 5:30 PM (GMT -7)   
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.
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/20/2010 6:03 PM (GMT -7)   
Rheumatoid arthritis in your pinky.... love it!

Some people empathetically tell me they have it in their knee... so frustrating!
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Dihydrocodeine, Paracetamol, Diphenhydramide, and scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 8/20/2010 6:55 PM (GMT -7)   
YES! Or someone will say- it's hell to get old isn't it?

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 8/21/2010 5:16 AM (GMT -7)   
As for the name change I think it should be Rheumatoid Autoimmune Disease. The arthritis word throws people.

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 107
   Posted 8/21/2010 6:26 AM (GMT -7)   
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.
Polyarthritis - diagnosed July 2010, suffering from May 2009

Prednisone - 5mg/day, Plaquenil, Vitamin D, Fish Oil, Isoniazid - getting me ready for Humira, also Prednisone shots ocasionally.

Pain - off and on

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/22/2010 3:11 PM (GMT -7)   
You look fine, there's nothing wrong with you!

Have you tried physio?


........ ARGH
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Dihydrocodeine, Paracetamol, Diphenhydramine, and scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/22/2010 9:41 PM (GMT -7)   
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

MELttdown
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 8/23/2010 4:38 AM (GMT -7)   
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!

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 8/23/2010 7:39 AM (GMT -7)   
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!!

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 8/23/2010 10:57 AM (GMT -7)   
Love it- it's an autoimmune disease did you get it confused with osteoarthritis?
 
 

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 8/25/2010 11:35 AM (GMT -7)   
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))

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 107
   Posted 8/25/2010 5:04 PM (GMT -7)   
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!
Polyarthritis - diagnosed July 2010, suffering from May 2009

Prednisone - 5mg/day, Plaquenil, Vitamin D, Fish Oil, Isoniazid - getting me ready for Humira, also Prednisone shots ocasionally.

Pain - off and on

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 9/8/2010 6:33 PM (GMT -7)   
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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