Comments | rheumatoid: Just Looking For Information

sabethea in rheumatoid

Just Looking For Information

Jul 30, 2010 09:49

My extremely loved sister-in-law has just been diagnosed with RA. Any advice on good websites, useful information for the early days of RA - anything, really, would be welcome. I just don't know where to start at the moment.

Comments 25

meaux30 July 30 2010, 14:38:07 UTC

I like Humira Junkies on Facebook. And not specific links but my advice is to be careful about getting caught up in internet madness about RA. It is a life changing diagnosis but people LOVE to talk about bad news online. I got diagnosed last year and for a while got so caught up in horror stories I was miserable. NOW I specifically look for real scholarly research from source like- Amercian College of Rheumatology and the Lancet. There is little doubt that early, aggressive treatment shows REAL promise. I can't beleive how great I feel after a several years of just not feeling "right." The Areican Arthritis Foundation site can even be a downer as it makes reccomendations like "get an occupational therapist" and "take naps." My life right now is 100% normal - I feel great, I do not have pain, I have tons of energy and RA is just a side note not my day to day existence. Sorry not exactly what you were looking for but good luck to your sister in law. I have actually purged most of my RA links becasue NOW that I have done the research I ( ... )

meaux30 July 30 2010, 14:42:36 UTC

ANd I don't know if this is weird - but I am happy to correspond about my RA experience - just message me and we can emial. I am not an expert AT ALL but I have tried a bunch of different meds and some naturopath stuff and exercise and am happy to just talk about what it has been like. Sorry for the typos above - I am a horrible typist!

sabethea July 30 2010, 16:02:27 UTC

This is just the sort of news I was looking for :) I'm very pleased for you - and yes, I have every empathy with you about the web thing: I have CFIDS/ME and there's a lot of downright nonsense out there. That's why my first thought was to come here, rather than try and google stuff myself (well, I did a bit of that, too) because I reckoned people who live with the illness would know what's true and what isn't.

Thank you! Thank you very much. It will be good to have something positive to tell my husband when he gets home (it's his little sister: she may be in her 40s, but she's still his little sister).

meaux30 July 30 2010, 16:14:29 UTC

OF course she is his little sister!!! Funny thing - I just turned 42. At 40 before I knew there was actually something wrong with me I was so achey and stiff and sore and depressed all the time I thought THIS IS WHAT IT MEANS TO GET OLDER - NOW I know it is jsut the RA - I do not feel like that anymore - I feel like I did at 30 or 25 just plain old me. Treatment makes a HUGE difference

Thread 9

funnel101 July 30 2010, 16:12:17 UTC

http://www.arthritis.org/disease-center.php?disease_id=31

sabethea July 30 2010, 17:01:18 UTC

*icon love*

Thank you!

smartlikeatruck July 30 2010, 16:49:32 UTC

I like the attitudes over at RA warrior. http://rawarrior.com/

Definietly fighters, over there. This is one of the best explanations I've ever read of having an "invisible" disease and its effects on your life: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

I would say this: Do your best to read up on what the disease actually means for her day to day life. Having people around who understand that, and aren't patronizing or gloomy about it is a great thing. I love having friends that are flexible with me, don't get angry when I'm too tired to do things, but make sure to push me a little so I'm not a couch lump!

sabethea July 30 2010, 16:59:58 UTC

<3s the spoon theory. I have CFIDS and have walked into Doctor's surgeries, taken a handful of their pens and explained it to them. It's depressingly unknown to medical types.

RA warrior sounds very good and determined. SIL is never going to do anything but fight on :)

smartlikeatruck July 30 2010, 18:20:56 UTC

Silly doctors, not knowing what life is really like!

Hyperbole and a Half also has a very amusing pain chart that is much more useful than those currently in use. Gotta keep laughing through the pain! http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

sabethea July 30 2010, 18:33:24 UTC

*diez*

Thank you! You have just improved the day massively :)

Thread 6

blackshini July 30 2010, 18:27:24 UTC

Tell her it gets easier, as time goes on. Really anything does the more you experiance it I guess. For me, finding hope and keeping it is really important. Keeping up with the latest medical advanmcements has really been helpful for me, and learning how to advocate for myself was key. Tell her she is her own best advocate, and to find a really good doctor. Tell her not to waste her time with doc's who wont listen to her, or treat her as well as she deserves to be treated. It will be a long road, but it sounds like she has some awesome support :)

sabethea July 30 2010, 18:37:21 UTC

That's great. I'm pretty certain that her family will NOT let any doctor mess her around: they are generally quiet, mellow and laid back, but you hurt one of them and the clan will make sure you never do it again! At present, my health is being pretty awful and my mother is advocating for me. It might be vaguely embarrassing to have my mother speaking on my behalf when I'm married and a mother myself, but HELL she's good. And I know SIL's mother well, and I would LOVE to have her behind me in a crisis.

Yes. Believe in yourself and know you know your own body best, so if you think something's not right, it ISN'T. Still working on that one myself, but I'm going to make damn sure SIL is certain about it...

jasmin_sane July 30 2010, 19:04:25 UTC

I'm afraid I won't really be of much help here, as this community is really the only one I participate in, anywhere, that's RA-related. And that's kinda what I wanted to throw in here: obviously, your sister-in-law might have a totally different experience to mine, especially given that I was diagnosed at 12 and she as an adult, but...

I have tried, several times, to find comfort and a sense of community among other sufferers of RA, online or IRL, and each time I've wound up disappointed. It might of course be just me, and the way I react to things. But I feel... I dunno, less like a human and more like I'm just a diagnosis - like we're all just our diagnoses - whenever I interact with others with RA. I guess it's as meaux30 says; people love to talk about bad news online - but it's also more than that, for me, and it really brings me down. And similarly, even now after nearly thirteen years, it still pisses me off when friends or relatives suggest diets or drugs or treatments they've heard about. I hate hearing about that stuff; I hate ( ... )

meaux30 July 30 2010, 20:32:45 UTC

I think I get what you are saying - I don't want to immerse myself in RA speak all the time either, or even most of the time, really just rarely - although I can't seem to shut up today!

sabethea July 31 2010, 08:23:07 UTC

Thank you for this. It's important and helpful.

fter nearly thirteen years, it still pisses me off when friends or relatives suggest diets or drugs or treatments they've heard about. I hate hearing about that stuff;YES ( ... )