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“sometimes they can migrate to the eyeball” ????? A real doctor said this? I am 100% unable to believe this RD writer got that quote from a real doctor. And somehow this writer managed to not be aware that when you are RA and your eyes are dry, what that really means is that you have secondary Sjogren’s syndrome. unbelievable. I want to get paid to write complete drivel RD must have some drivel openings.
I hate to say it, but the problem is, a lot of people DO have RA/RD that is exactly like that. I have two good friends who have RA. One has only one knee affected, that flares a few times a year. The other has only her wrists affected and they flare about once a month. Compared to what most of us live with, this is incredibly mild! But they have RA, and this is what people are accustomed to seeing RA as. The education needs to be that for some people RA is very severe, cripplingly painful, disabling and soul destroying. My rheumy’s stats are 70% of people have mild disease. 30% have mod to severe. Of those, 30% don’t respond to meds. I’m going to ask him where those stats come from, because we are that 30%! Which makes sense, because the rest of them are out living relatively normal lives.
You are not going to get education to the public until the advertisements from drug companies actually show reality. The “Oh yes you can” campaign made an impact. Even though he has PA, the golfer does also. People opening jars slowly and gracefully walking down the beach do the same. People expect you just take a med and ‘poof’ you’re normal again. That’s advertising and marketing – it’s not always a realistic picture. And understand realistic is not their purpose – selling is.
RA is not pretty and I doubt it will ever be seen realistically in an advertisement.
Last year I hosted at a table for arthritis at a health fair. I was shocked at the reality of what people do not understand about arthritis, much less Rheumatoid Disease. I also heard some interesting information recently about a comparison of funds raised for diseases through their annual signature event. Decided to look up the info for my area for myself – Cancer, Heart and Healthy Babies brought in $1-2 million for their big events and Arthritis was $150,000. There’s a serious lack of awareness and understanding and until that happens patients with rheumatoid disease will continue to be seen in a unrealistic way.
I was diagnosed with RA 10 years ago. Since then I have done a tremendous amount of research on treatment options. I realize pharma is big business but I opted for a more natural approach to dealing with my RA flare-ups. I know a number of people with RA who are on the drugs for RA and they still are in pain and also are dealing with side effects. Many of the foods we eat affect our immune system and cause inflammation. I have quite eating anything with refined sugar in it and stay completely away from processed foods. I use some herbs to keep the inflammation down and for the pain. My RA symptoms travel around to different joints but for the most part I seem to have it under control.
I’m curious what you think those of us who have tried all the diets / acupuncture / supplements and still have major disease activity should do.
I agree that RA is larger than what was described. Yes, people don’t want to hear about the aches and pains after awhile. They do care, but it’s more than a person can bear. Thanks for seeing the humor in things.
I feel like your website should have “Moderate to severe” tacked on somewhere. I have what I would call “mild” RA (as in no one ever told me to what extent it was, but I was, in fact, diagnosed symptomatically and eventually became seropositive as well), and it just feels like those like me don’t “fit” here. Honestly for a mild sufferer you don’t “Advertise” correctly on here. The usage principle in particular is rather wrong for some of us. I guess I’m very fortunate in that. Five years ago when I first found this site it gave me the idea that I would end up disabled within years. It doesn’t follow that course for some of us. For those like me five years ago, don’t resign yourself to thinking your disease will be as severe as people’s on here, maybe it will, but maybe it won’t, just lose your expectations and work with whatever your RA does to you. Maybe you won’t feel as doom and gloom for as long as I did before I realized I wasn’t as bad as I or other people thought.
I don’t agree with that Sarah- Many posts on rawarrior say ‘ some people have a more mild form of RA, others more severe. ‘
I was so happy to run across this site- I really thought I was ‘ loosing it’! How can it possibly be as bad as it is? Sure, I am one of the unlucky ones that have a severe form or RA, probbably because I smoke! ( another reason I should have quit years ago or never started!) but before I found Kelly & rawarrior I really thought it was in my head- I had to be imagining it because how can you have such overwhelming pain , and live with it everyday?! IEven after 8 months of this now before I try to get out of bed I almost forget I have it, until I move! …that is if it’s a night I can actually sleep through the night with out getting up because of the pain.
If you look through the posts though, I don’t think it ever says that it is ALWAYS horrible, or you will ALWAYS end up in a wheelchair! I re-read a few posts to make sure and all I found were ‘ it could be this bad, but not for everyone’ or a few unlucky ones end up to be ones that the medication does not help.
I went from working full-time and over-time as a waitress at a reataurant that was always busy ( my husband was out of work so I worked as much as I could) to not working at all and wasn’t even able to get my housework done!
I shuffle over to the couch when I get up, wait for the pain meds to kick in, then SLOWLY start to move around and get basic housework done- with many breaks in between… then in the later afternoon the horrible pain is back and the meds just take the edge off. ( tho from what I have read I am lucky to have a Dr. that will even prescribe some! )
I can no longer do yardwork, paint, go out in the evenings with my husband, to church or the kids school functions… I just can’t do it! I am so wiped out from this constant pain that even ice pack. heat packs and pain meds just take the edge off!
I am just so thankful that I have a husband that understands and helps as much as he can, and kids that take up the slack for me! I am so Blessed!
Thank you Kelly, and rawarrior friends! You really do help so I don’t feel so alone, and help me understand this horrible disease… something that nobody can really understand if they don’t have it themselves- how could they? Who would believe it is as horribly painful as it is unless you live it?