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February 09, 2009

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Cathy

You nailed RA perfectly. The closest thing I have found to help those of us with RA who want to do yoga or pilates is to follow a book for senior citizens. Doesn't make you feel real sexy, huh?

I don't know how many acquaintances have said, "I didn't know you have RA." As they are saying it I might be thinking, "Yeah, it just took me five minutes to get the energy to stand up from this table because my knees hurt so bad" or "I haven't moved from this table because I didn't want to embarrass myself getting up."

Oh well, luckily there are alternative practitioners out there that can give us diet information and don't act like we are from another planet. That is what has saved me. That and the wonderful people I have met on this journey.

Katherine

Sara, this was an amazing post. It's so true.

"Just once, I'd love to get an email or a facebook invite from a friend asking me to a benefit for the disease I've actually got instead of some other one. Wouldn't it be lovely to be able to take yoga or pilates classes especially designed for people with RA? " I've often wondered about this - and searched for it as well, to no avail.

"And, since it is a chronic disease, there is no 'Shout from the rooftops, I SURVIVED IT" moment. There are only smaller, harder-to-portray moments of glee and glory, such as 'HOORAY! My drugs are working! I don't feel like utter shit today!' But RA isn't ever really over, it's just dormant at times-- if you get lucky, that is." This is one of the hardest things to come to terms with, for me.

One of the reactions I often get is: oh, the old people's disease. I have to explain, no, it's not osteo. But it's awfully depressing to go to the drs office and be the only person younger than 60 in the waiting room.

S.

As usual, you got it right. Thanks for always keeping a funny and yet real outlook on having a chronic illness.

Kathryn

Write your own book. You clearly have the talent.

Unlike you, my RA didn't begin until my 50s. Here are things I have found to help:

Water aerobics -- We installed a therapy pool in the backyard, a redwood tub with jets, 5' deep by 7' wide. Haven't been able to pay for it yet because of the economy, but it works out the flares and stiffness and keeps the figure trimmed too. Most public pools and gyms have water aerobics classes. I think this is the single-most important thing I've done to put my RA at bay.

Progesterone Cream -- There seems to be a hormone component. But you need to figure out what deficiencies you might have. A friend of mine is an expert in this field and sells tests at virginhopkinshealthwatch.com.

Figure out what foods contribute to your inflammation, ie, wheat, dairy, chocolate, beef. If you're like me, you get asaulted with all kinds of advice in this area, but I find some truth to it. For instance, if I eat too much bread, my gut bloats and soon I'm feeling pain. Not a cure, but helpful.

There's a report that says vitamin C does nothing, but it seems to help me with pain. Along those lines, fruits and vegetables also help. I haven't found fish oil to help me.

I went to an acupuncturist and the pain in my knees completely went away in two visits after surgery unrelated to RA 18 months earlier.

Set Google Alerts to send you news alerts on blogs and news articles on RA on the latest research and scams. That's how I keep up with your blog.

BTW, I've written six books in my name and four for other people.

Melissa

Funny, I was just thinking that you should write a book. I've been looking lately for a book on RA and I've found one or two but I'm not sure that is what I'm really looking for.

In fact, I'm thinking about writing one myself. I could really use a "chic lit" book about RA that would make me laugh but would also give me some information about how other people deal with RA.

Write it and I will buy it!

Ursula

someone get this woman a book deal!

Becky

This was great and so true. I have dealt with RA since I was 21. Wow, maybe I should not have written that since that is 35 years. The reason I did was because I agree generally people do not see the illness. Plus with times of seeming remission before another "blow up", times where people see you functioning like a "normal person, these "good times" cause people to not "get it", that this will never go away and what I am doing is managing the illness in hopes of continuing to try to have a "normal" life. Most of my famiy do not get it which you would think they would since my father and grandmother both had RA. Yes it is frustrating. I think an RA Chic Lit book would be a hit. I bet we could all contribute some good stories to it.

Sara

Wow! Thanks to everyone for leaving comments and especially for the encouragement to write a book! I have been thinking about putting together a book proposal, so now I have some pretty good motivation to get my act together! You all rock.

Cathy and Kathryn-I am planning to give acupuncture a try this month! I'll see how it goes, but I agree, the other tools out there are helpful. I do take vitamin C but didn't realize it could help with the RA, too. hmmmm.

Katherine- I know exactly what you mean!!!! At all of my appointments, I'm sitting there in the waiting room and stick out like a sore thumb because I am decades younger than the other women in there.

S.-thanks!! Glad to keep the humor alive.

Melissa-sounds like a good deal to me!

Ursula-where, oh where can I find one. hmmm.

Becky-what a good point. When others see us on our good days when everything appears fine, it's easy to think nothing is wrong...ever.

Michele

Ha. LOVED the post.

I had the "oh, there are drugs for that, you'll be fine," reaction from now-former friends. I don't know whether to laugh or smack 'em upside the head when I tell them I can't walk and they say "hey, let's take a walk and go get coffee!"

I love your point about the arthritis walk and I couldn't agree more. Maybe we could have an arthritis swim. ;-)

I've stopped using the word arthritis when talking about this and have learned to refer only to "an autoimmune disease where instead of attacking germs and viruses my antibodies attack my ligaments and tendons." Arthritis is just a total miscommunication.

Thanks for keeping up this blog...you give me hope for a lot of things -- cute shoes, travel, and good medications.

Take care!

Kathryn

My husband stopped using the word arthritis and now tells people that during the worst of it, my knuckles turn black and hands and feet curl up. That usually redraws their imagery.

I call it "stigmata," which mostly only Catholics would understand, though they are also the most likely to be offended by it.

The visit to the acupuncturist was mixed. The needles were good, but the DOM didn't understand RA. First, oriental medicine says it can be caused by damp wind (ok, my symptoms did start after an Alaskan cruise), and also by blocked chi in the knees (uh-huh, I did have the knee injuries). But then he went down the path of "leaky gut" as the cause (so popular with alternative medicine groups) and that I've been eating the wrong things. He wanted me to stop all meds right now because they were trashing my liver. Afterall, the pain isn't life-threatening, and if I just went on a macrobiotic diet and saw him every week for needles, herbs, and IV nutrients at a cost of close to $1000 a month, we just might be able to beat the RA, which he didn't think I had in the first place because my joints weren't classically deformed. The meds, hello!

Having not come down with RA until my 50s is no doubt less heartbreaking than if I were in my 20s-30s. I've done a lot. But when it happened, I was in the middle of a new career as a wedding photographer, which I've finally been able to rejoin. But cute shoes? Not even dresses. Cute jackets though.

Sara, what is it that you do in your career that takes you to different countries and keeps you up late drinking champagne?

Sara

Kathryn,
Ugg, that is not the acupuncture experience i'm hoping to have. just like i was my western docs to be open to alternative treatments, i want my alternative practitioners to be open to my meds, because i am!

I work for a non profit dance center, so I work with lots of different artists. I get to travel to attend festivals and see work, and all the late nights and what not come from the fact that a lot of networking is done over drinks. it's just a really social field! there is always an event or reception happening somewhere...

Michele-i love the idea of an arthritis swim! thanks for your encouragement-It's great to know people are reading it and getting something out of it!

Sara

Tery

I love the post. I was diagnosed with RA 4 years ago and have heard most all of what you have included in your post. One of my favorites was while at the gym I go to, after about 50 minutes of weights I was talking with a guy there about our limitations. After I told him I had RA he said "Oh, so that's what's wrong with you". I didn't know whether to laugh or punch him. I opted for the first option.

Sara

Tery-Man I wish I could have seen you opt for the second option. He wouldn't have had a clue what was coming at him!!! People really do say the damnest things! Blerg!

sarah

sara,
yes! i am now 29, been diagnosed with RA since i was 18, talk about having your "best" years altered (no fair)! and let's not forget the response, D - "but you're too young to have Arthritis!" um, hello? as if i didn't know i am too young to have RA, but um hello? i have it! i really enjoyed this posting, i can relate whole-heartedly and i dig your "polka dot ribbon" idea, i think you might be onto something! i'm down. i've spent the last 11 years either hiding my disease b/c i was too embarrassed to talk about it, afraid people my (young) age just wouldn't understand (which a lot of them don't, until you find your very best friends), and more recently, i've decided this is who i am, take it or leave it, everyone has baggage! people still give me the "sorry" and "disbelief" look when i tell them, but as the years go on, it phases me less, and i think of myself as being an informative, young RA spokes person. because how else will we ever make it a "popular disease?" i once read that telling someone for the first time about an "invisible disease" is like coming out of the closet every time. let's put it out there, let's wear our polka dot ribbons!
-sarah

Sara

Hey Sarah,
You are right-how could I forget the "But you're too young...' response. I HATE that one. I know they mean well, but what a dumb thing to say to someone who already has it. I'm down with the polka dot ribbons! We can start our own campaign! Where are you located? Are you anywhere near NYC?

sarah

sara,
i'm on the west coast, near san francisco, between the two of us, we've got the coasts covered!
so i did a search for RA ribbons and found this site breaking down colors with dieases and causes, geez, a bit depressing: http://www.craftsnscraps.com/jewelry/ribbons.html
according to this, RA is purple and blue (as well as pediatric stroke, ack!), but i think we need to make our own, i don't know about you, but these ribbons are looking a little dull and RA is anything but dull. let's see, what color polka dots? i'm a craft nerd and i'm about to have foot surgery (thank you RA) and be off my feet for a while so i am into projects, maybe i could make some... a hip "cause ribbon," the brainstorming begins.
-sarah

Sara

that's awesome. hmmm, I am partial to a white/peacock green or something like that? Maybe purple? what do you think? If you are seriously going to make them, I want one!!!

Amanda

I love this post, Sara. It's so true! I stopped telling people for a long time because I would get eye rolls or blank stares or really insensitive comments. People just don't understand it and they lump both RA and OA in together as one thing. I wanted to hug Kathleen Turner when she announced it but hmmmm...I wonder if we could convince a Jonas to do some PR for us. Now that would get some press.

Sara

the Jonas brothers....if only (not that I *really* wish RA on anyone). I've been asked that question before-if I thought a celebrity would make a difference. I think RA should be rebranded-give it a whole other name and put a big flashy face on it....then maybe we'd get some research $$$ of note and some more clarity!!!

robin

yep yep yep. I think about this every day! it's so not fair!
You know that book, "Crazy, Sexy, Cancer"? Well, we need something like that. And we need a freaking awesome fundraiser...not a damn walk. Something we can do...i'm gonna brainstorm!

Alena

I am a HUGE fan of your blog...Especially this post.

I've recently been diagnosed with RA, I am 22 years old. I found out on December 22. Three days before Christmas, and three days after I graduated from college. Whoa...what a slap in the face.

I am slowly trying to figure out how to deal with RA and what it means. I'm angry, sad, scared, but mostly angry. Especially when people stare at me with pity, or tell me "it's a great time to have RA.." blah. They have no idea.

Anyway, your blog helps me feel less alone, and you have no idea how grateful I am.

Penguin

Great post - it really does sum up people's attitude to this stinky disease! The one I get ALL the time is the 'Oh yes, my' great aunt/uncle/cousin's dog or whatever 'had that and the doc said there was nothing you could do except lose weight'. AArgh - no, that's osteo and it's not even true about that! Grr...

I know why RA is called RA but it would be handy to give it a name that didn't relate to arthritis and so link it in people's minds with osteo.

Go for it on the book front - maybe you and Robin and AJ should put a young people's guide to all the fun of RA together?

Sara

Robin-sounds like a plan....let me know what you come up with! What would be the RA equivalent of Crazy,Sexy Cancer? Sassy Cracking Joints?

Alena- I'm always sad to hear about ANOTHER young woman getting hit with RA. I'm sorry you have joined our ranks, but there is life (and it's even still fun) after RA. You'll get there. Thanks for your words of support for me-it's exactly why I started this blog, and it means a lot to me to know that it's working!

Penguin-you might be on to something...

Britta

And all this time, I wish I had RA!!!!! Seriously! Ugh no one seems to know anything, let alone has ever heard of Spondyloarthropathy! That is a form of arthritis for ya....and I am the (un)lucky, 20, soon to be 21 year old girl that has it.

Sara

Hey Britta-I guess the grass is always greener, right? I have heard of Spondyloarthropathy, but only because I have RA. I can only imagine with horror what kinds of reactions you get to that! we'll keep kicking ass, though!

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