Misery loves company (or just support)

One of the things I love most is discovering a new blog by someone else writing about their life and experience with this bum disease called RA.  When I was first diagnosed, I felt like I was on an island , drifting solo in a sea of confusion, pain and loneliness. Somehow, I kept striking out when I first googled endlessly online searching for people like me writing about RA.  There were a few out there- but somehow, they weren't turning up at first.  Once I started my own blog, I finally started stumbling across some others, and it was like taking a drink of water after wandering in a desert. I was sooo happy to find others in my boat who felt the same way! 

Since then, almost a year has passed since I began this blog, and in that time, more and more of us have been putting our thoughts and feelings out there on the internet, making the web of voices sounding off about RA thicker and louder. Frankly, I couldn't be happier about it!  The isolation that I first felt has slowly dissolved, and I now feel that there is a bold, vocal community of bloggers out there insisting that our experiences with RA be recognized. A few months ago, Miss Waxie came online with her awesome comic strips and searing observations; RA Guy has added a whole other perspective as well as some absolutely beautiful and profound posts on, well, life (with or without RA).  And just today, I found Sadie writing frankly and bravely at Well, This Sucks about life as a very non-Single gal coping with RA and all its implications on her life as a professional woman and her relationship. 

More and more, the presence of all of us who are living with this often misdiagnosed, misunderstood disease is becoming stronger and stronger. For a girl who could only find one book on the shelf the day after I got diagnosed, I feel a little bit like a kid in a candy store, and though I don't wish this disease on anyone, I'm so glad that more and more of us are putting our voices out there.  To that end, I've put together a page of links that you can find on my navigation bar.  It lists other sites that are resources for RA, blogs about RA, or blogs written by people with RA or other chronic conditions (and also a few other sites that I think are awesome for variety's sake).  If there are other sites that you know of that need to be there, let me know, because I know I haven't captured them all.  I'd love to amass an encyclopedia of RA sites so that we all know how to find each other, and so that others who are just beginning their journey with RA can find a link to everything they might be looking for.

Check it out, and let me know what's missing!

Comments

[millicent]

Everyone needs support, & that is the beauty of blogs, etc. these days. Imagine how lonely it must have been to have a disease like RA decades ago. Plus the drugs didn't work then. Out of the darkness....

[Claire]

This list is so helpful Sara! It really does help having other people out there who can understand and relate to the pain and annoyingness of this disease. I was in the same boat as you first were - was terrified and felt extremely lonely when I was first diagnosed. Afterall, everyone assumed that only "old" people get arthritis. But that feeling diminished about a week ago when I came across your blog, and of course all these other blogs. RA sucks, but I believe we can all handle it better when we have each other to vent to. We just have to keep believing :)

[Cathy]

Thanks for sharing the list Sara. I have been amazed at the stories I have read from other RA bloggers. When I was first diagnosed five years ago, I had to stop reading anything on RA that was online because it was all so awful. However, what I am now reading from other bloggers is that they have bad days but they also have good days and they are constantly learning about themselves and becoming stronger people. I feel hope coming from these blogs. Thanks to everyone who shares their stories.

[Anne Smith]

Hi, I've been reading your blog for a while now and I really know where you're coming from with feeling that you were on an island, isolated from everything and everyone. I was diagnosed with sero-negative RA at 26, I've lived with it for 10 years and had got used to the lonliness (even though I am married), confusion and pain that going hand in hand. I finally got used to coping with the pain and fatigue, when I went to see my Rheumatologist for my check up and she has just told that the ciclosporin I have been on was doing me more harm than good and that as I wasn't showing any signs of damage from inflammation (even though my fingers have started to turn at the tops!!!!) she has taken me off it and just left me on diclofenac and pain killers (which don't even touch me anymore), so I am now more confused than ever as I feel that even though I have told her that I am stiff every morning, I swell up every day and I am in constant pain (in my feet and hands especially)that it doesn't matter how I feel and that the tests are the only thing that really matter to her, never mind how i feel.

[RA Guy]

Thanks for posting the list of RA bloggers! Just yesterday I came across a carnival of MS bloggers, and was slightly lamenting the fact that we did not have a corresponding RA list - so I think this is a great step in the right direction.

I lurked on your blog for a few months before I finally started talking. I love your blog and comics and have shared many of them with friends and family. Your blog was a big inspiration in my decision to start my own blog (and I felt and continue to feel that the male voice of RA continues to be too silent).

It's been great sharing my story and reading about other people's stories of living with RA. This virtual group is becoming a wonderful support resource as I continue to move through the ups and downs (and yet more downs) of living with RA!

Here's hoping that the voice of RA bloggers only continues to grow louder.

[sara]

M-I know, I am so thankful for the internet and the fact that we can all find each other, regardless of time zone and distance.

Claire-you are absolutely right. I'm so glad that you found all of us!

Cathy-I agree; it's nice to find others who, even though they are still having a difficult time, are finding humor and a sense of fighting back.

Anne-wow, it seems like you need to see a new rheumatologist! Sero negative or not, your doctor should be trying to get you as much relief and get the RA under control-that is their job, and it doesn't sound like yours is doing it at all. Is it possible for you to see someone else?

RA Guy-that's my precise hope-that all over the place, we can all start coming together and start to change things for all of us. I'm really glad you added your voice to the mix-there aren't enough men out there talking about their experience. Stay strong!

[Becky]

Sara, Imagine my surprise at my blog being listed. I know that when I first was diagnosed with RA I was very upset. I was 21 years old, yeah a long time ago. I am so glad you have the list started. It always helps to read about how others learn to deal with this disease in their lives. Just knowing we are not alone in our frustrations helps especially when there may not be people for us to talk to who really understand what we are going through. Thanks.

[Miss Waxie aka A Comic Life Indeed]

Hey there Sara!!

Thanks for your kind words (and yes, I do take "searing observations" as a compliment! :) )

I think it's a funny paradox - I know I was always looking for people writing about their RA, actual patient accounts rather than Mayo Clinic reads on my prognosis or how I was supposed to feel, but somedays, RA just doesn't allow for blog reading, much less blog writing. I think lists like these, ones that streamline us, are really, really helpful.

But thanks for including me in yours! Hope you're doing well!!

- Miss Waxie

[Michele]

This is so true, and I've been incredibly grateful for blogs, forums, and online info. I've got ankylosing spondylitis and there's even less out there on AS, so I'm grateful that you RAers are so inclusive. :-) As soon as my blog is shipshape, I'll let you know. Thanks for letting me be a part of the RA community.

[sara]

Becky-thanks, and I totally agree. Talking helps so much. It is also great for us 'newbies' to be able to connect with others who have figured so much out already.

Miss Waxie- thanks! I know, keeping up with everything online is a challenge. I hope your cataracts surgery went well!

Michele-My good friend has AS, and it's very true; as hard as it is having RA and dealing with all the misconceptions, etc. AS is twice the fun. You should definitely start a blog!