Rheumatoid Arthritis Therapy: Is That What Blogs Do?
Is an RA blog just cute stories?
Okay some folks have been asking me about how Orencia is helping me. So, I’ll give an update today on my Orencia Rheumatoid Arthritis therapy. Uh-oh, were they just being polite?
Can I say something else first? I’m really uncomfortable blogging about my own RA, so it’s not front and center on this blog. I can always tell someone’s lying when they say, “Oh, I’ve read your blog.” And then it’s followed by: “It’s a nice journal of your RA stories.” Um …no.
Yes, there are some stories in the RA Onset Story project and a few interviews of those who have RA or another form of autoimmune arthritis and a few updates of my own RA. But, don’t you agree that’s not the main point? Last night, I thought about this as I was trying to explain to someone what the point of this community is.
What is the point? Are blogs a kind of RA therapy?
It might be clear if I tell you about my day. Early in the morning, I finished up the post on the new RA drug Tasocitinib and the ORAL trials. Then, I checked my Twitter. A friend had already sent me three tweets about this article saying that RA is the emotional problem of troubled women who can’t express their anger properly. I wish I could see the look on the faces of tough guys like Terry and Dan when they read that!
Several emails. Attempted some laundry. There are about 20 joints flaring, so I didn’t get very far. Read several stories to my Roo. Dropped off my daughter for a ride to her tennis match since I could not handle the drive. Typed about 10 words a minute with my big fat finger and screaming wrists and elbows to work on my Mall Map to help the newly diagnosed with RA figure out which end is up. Fixed peanut butter and jelly for dinner.
Are you still with me? The end’s in sight. My day ended with another link someone sent me, a strong contrast from the one I read in the morning. It is a New York Times story about how folks with chronic illnesses help one another through online communities. It’s a great article. Their conclusion: these “sites are used to share information from the front lines.”
If sharing information is Rheumatoid Arthritis therapy, count me in
Even our stories have a point. Isn’t sharing information the point of online communities? Is it obvious from my typical day why I write this blog? This disease has disabled me, so I know what it can do. I feel like I have to do something to fight “on the front lines” against this disease. Meanwhile, it is tough to describe the amount of courage that this community has given to me.
Did I remember to talk about how I’m doing on Orencia? Never mind, you probably get the idea it’s not helping enough.
Recommended reading:
- I dare them to say that to Terry! Terry’s RA Onset Story
- I dare them to say that to Dan! Dan’s RA Onset Story
- Yep, it’s a story about me! The Me Before Rheumatoid Arthritis
- Just for fun: Why Am I Rheumatoid Arthritis Warrior?
hey ur blog gives strenghth to others too……
i dnt know anybody with ra in my friends or family…
if someone is ,even then i cant talk abt it i know,i will end up crying..
i love to share here my prob n new ideas….
thanks
Rachel, it’s hard when you don’t know anyone with RA! I know. Thanks for being a part of this community too. I know people want to hear from a young person like you about your ideas & struggles.
Ok, now I’m angry. I just read the article by Deepak Chopra saying that RA is the result of troubled women not being able to express their anger. Hey Deepak…come on over and I’ll express some emotions for ya….. you jerk. He reminds me of my first rheumatologist, a Pakistani who said “you read too much” when I went to my appointment with a list of questions.
Diane, yeah. It’s pretty creepy. Do they do this to cancer patients? Diabetes? That’s what we get for having a disease that science hasn’t fully explained or cured yet: lots of “mystery” as he called it.
I’ve been hauling RA and other immune related diseases around since I was 17, I’m now 56. Deepok can kiss my big fat steroidal butt. I’ve let the anger out time and time again, but I still have RA.
The dreaded “wandering uterus” explanation from the flat earth society and the venerable Siggy Freud. And then, on the other hand, we have science, for people who enjoy thinking and finding real solutions to real problems.
OMG Deepak Chopra said RA is a results of troubled women not being able to express their anger. I have always respected him but that statement is SOOOOOO incredibly off base.
Online communities are absolutely therapy. We need to hear from other folks who are going through the same thing we are.
I think this RA Community has helped several people! I know it has helped me. I feel so much more “comfortable” with myself knowing that I am not alone, there are others who feel the same way I do. Now only has it caused a disability as far as my joints, my skin is effected (especially my face), I am emotionally “disturbed” causing anxiety and depression.
And trust me when I say I definitely am NOT the type of woman who holds my anger in—ask anyone who knows me! I voice my opinion and I must say in a very frank way!
So this means he has the cure?!?!? We just get some therapy for our repressed anger and the RA will go away? How wonderful and simplistic, why didn’t someone think of that sooner?
Kelly, your blog has been such an inspiration to me and your support has been priceless! I truly feel that God led me to this community. I felt SO alone in this struggle and it has helped me so much to know that I’m not alone in this fight.
I meant to tell you the other day…my husband was chatting on FB with a friend of ours (more his than mine) and he made the comment “That wife of yours is a warrior! I don’t know how she keeps going the way she does.” He went on to compliment my hubby about how wonderfully helpful and supportive he’s been. I immediately thought of you! I guess we’re all warriors here, huh?
:soldier: Indeed we are Aubrey.
Kelly, I hope that it gets better with the Orencia for you…keeping my fingers crossed… {hugs}
I’m not sure how I’d cope with out your blog. The information, the stories, comradeship….makes me feel just a little more in control.
Love this – I sent my own litttle “tip” to Deepak about his view of RA with a copy to Fredric for repeating it. Thanks for all you do. You are truly our warrior and we ♥ you bunches!!!
BTW PB&J is quite nutritious! Hope you have a great day 🙂
Kelly, thanks for your blog. I am finding invaluable information with regard to RA. My friend was recently diagnosed with this illness and I am developing a better understanding of it and it’s effect on her. Much appreciation and best wishes to all who suffer with RA, you are all phenomenal and brave.
So, I posted a strongly worded response to Mr. Chopra’s BS. Though I was forceful in expressing my views and opinions, I supported my comments with facts (citing references) while remaining polite and G-rated. As a professional writer, I know nothing I said in that comment was disrespectful, obscene or malicious – just honest and fact-based opinion about the author’s omission of facts and his complete lack of respect for those with RA. Yet within minutes, my comment was removed.
Seems not only is Deepak ignorant of medical facts, but he is so thin-skinned he can’t let critical comments see the light of day.
I pity the ignorant fool.
Dan! I was wondering why the only comments there were so worshipful. Bwhaha! Thanks so much. Now we know why. :chic:
It makes me feel better. It was sad to think that “everyone” believed those lies.
That is fascinating. I read through all those comments thinking surely someone would question him!
I’ve been “off” Chopra since reading years ago in one of his books that a tidy house was the key to a good spiritual life; it’s not that I’m against being tidy, I just don’t imagine that he has to make it happen himself.
I was really disappointed when I saw the author of the offensive article was Deepak Chopra… I expected more of him!
When I first read the article I have to say it sounded almost verbatim what I was told when I was diagnosed: “It’s psychosomatic and you need to talk about your emotions and it will go away!” The joke is I’m a really open book with my emotions and I express them freely!
This disease, and people’s comments and behaviour towards it, does give one a new yardstick to measure people’s character by!
Good point about being “an open book” – Is there any illness that has more bloggers expressing their opinions than RA?
Blogs to me are for learning, sharing thoughts, RA therapy. I have not found another RA’er to talk with in my community and no support groups here. Thanks! I’m one of those who recently asked how Orencia was doing for you Kelly. I pretty much knew it wasn’t doing much,sorry, but this is my way of showing that I’m interested and care how you are doing. :-)) I read the Chopra article, disturbing, but pretty typical of an alternative thinker. If it’s not emotion then it’s gluten, mercury poisoning or stomach acid imbalance that is supposedly causing our disease. Wonk wonk wonk, I’m sick of it and even what mainstream experts are saying about how and why we feel the way we do!
Like you, I’m fed up. If I am the one who is disabled by RA & I’m spending all my time and resources on this fight, then I’m going to call it how I see it. This is WRONG.
I must say the Deepak Chopra comment really ticked me off…I also read the comments and everyone seemed to be in agreement with him. I don’t want to dismiss anything anyone has to say out of hand, but I have to be the least repressed person I know…I call a spade a spade, and if I don’t like something, I will definitely let someone know. This is just so frustrating that someone will actually credit this as the cause of a systemic disease…no one here asked for this did they?
Robin,
Did you see Dan’s comment? Apparently, when the guy gets comments that disagree, he deletes them. I know some bloggers do that because I’ve also had my respectful comments deleted on various blogs. Not much of a conversation is it?
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I was so thankful when I found you! No one I know has RA, so this site lets me know that I am NOT alone. It’s priceless. I am so touched by the articles and stories and it gives me strength to push through one more day… one day at a time. Thank you, thank you, thank you for this site *crying*
O:-) Thank YOU for taking time to say that.
FUNNY! Ask my husband if I don’t express my anger! 🙂 Totally disagree. That theory went out with the dinosaurs I thought. It’s just sad that there are people out that will read the opinions of Mr. Chopra and believe it as gospel truth. We have to keep doing what we can to get the CORRECT info out there. Kelly-you do so much of this, and I’m honored to be part of this community. Praying that the Orencia starts helping you.
Chopra’s an idiot…we’ll see how long my comment lasts on the article site…
🙂 Laurie
Let us know. :chic:
re: Chopra
Strange that he’s pulling this idea for a post from his best-seller of 12 years ago. Writer’s block I’d say. We can only hope that he updates his knowledge soon, and that he’s not a practicing physician.
Hahaha! I am very capable of expressing my anger Mr Chopra! Just ask my husband..
What a joke!
This guy is here in Melbourne at the moment – I saw him advertised only yesterday. I hope he doesn’t get much interest if these are the ideas he’s sharing!
Pain free day to all!
I am SO ANGRY about Deepak Chopra’s article saying that RA is the emotional problem of troubled women who can’t express their anger properly. There, I’ve expressed my anger properly. I still have RA. WRONG, Chopra!!! Unfortunately, it seems to me that a lot of this alternative fringe-misinformation is seeping into the mainstream medical / doctor perceptions and opinions. Now I’m very angry!!! But I still have RA.
On a more positive note, Kelly, you ROCK!!! What a difference when you consider the misinformation bombarding RA patients from all sides. Then come to your RA Warrior website, what a refreshing wealth of great information and support!!! Thank you for the awesome work you do “on the front lines”!!! :soldier:
Hey Kelly, just got in from work and read your email. Checked the link and am sitting here perplexed. All this time I felt comfortable with who I was, playing football and racing motorcycles, but evidently I am a troubled woman who can’t express my anger properly.
If I were face to face with Deepak Chopra, I would show him that I have no problem expressing my anger. What chaps my butt is all of the comments thanking him for this invaluable information and then Dan’s was deleted. What a MORON.
btw, I’ll talk to you next week about Orencia. Some turn for the better lately.
I wonder how long it will be before my comment is removed. :sarcasm:
Let us know. 😎
Chopra hit a nerve with me because all these years I’ve wondered if I DID somehow bring this on myself. I didn’t try hard enough to raise my endorphines, I didn’t eat right, blame blame blame. If there is anything that can help me get past that it’s reading this ridiculous article. Seeing it in print has wakened me up, it’s time to let it go – my thinking has been a waste of brain space as much as the wannabe guru’s writing is a waste of ink.
Thank you for this wonderful comment. I’m sure it will help someone. I had just had the same discussion with another woman when I saw your comment. I wonder if it’s an unspoken fear.
Of course, RA broke in like a prowler & you are the resident, not the suspect.
I just read Chopra’s article and there is steam coming out of my ears right now. What an idiot. Like us RAr’s need articles and comments like that when we have a hard enough time making people understand what RA is and how it effects us.
On a good note, this blog is my support group. It helped me to face the fact that I have RA and I am not alone. It helped me to talk about how I feel and what RA is to people in my life who don’t have it. It has helped me to ask questions at my doctor’s office when I was confused. It has given me support and information that I have found invaluable. Thank you Kelly for this site and to my fellow RA Warriors for the support that has helped me function with RA.
Taffy, your presence has helped me, too. O:-)
This part of the fight does get old. I never asked to get into an “awareness” campaign any more than I asked to get RA. But like you said, what they wrongly believe has an effect on our lives, our care, how we are accomodated…
I’m with Nanc – Deepak can kiss my fat steroidal ass as well. Perhaps there was something to the internalizing all my frustrations and emotions that might have played a part in it, but it’s certainly not because of all this anger I’m harboring. I’m one of the funnest, most well adjusted women out there. I speak my mind and calls them as I sees them. Regarding the validity of blogs. On occassion I see several “whiney” posts together and I move on, but overall I think these blogs are such a great outlet. I really know almost nobody with RA. Or other chronic illnesses. So nobody really knows what I go thru. Or more realistically for me, what I went thru. I had 3 years of sheer hell after diagnosis. Spent most of my days in bed. Everything hurt!! Always. So fatigued. But most of that is behind me (not the fatigue!!), but the pain is gone. I function mostly at 100% – I try to exercise every day (to get rid of the fat steroidal butt) and work too much and then have a whole life outside of work. But I still need this blog because I feel connected with all these people and I also hope that I can encourage people, especially you Kelly, to never give up. To always look ahead and know that soon one of these days you’ll be a little bit better, and then a little bit better and before you know, you’ll almost feel normal again. Except there’s always this threat of it returning and then never ending meds, doctors visits, worries about every little bump and cough. But don’t ever think that your blog is not needed. We all need and appreciate that you did this – and continue to do this. I wish you relief from pain – took me three years, but I got there. Remission for 5 years, then back out for 2 and I’ve been feeling pretty good for almost a year and really good since March of this year.
Oh, and let’s not forget that it was this blog that convinced me to chat with the RX DR about injectible MTX. What a change that has had for me. I never imagined such a change could make me feel so much better, but it did. I never would have known or considered it were it not for reading this blog.
Keep it up!!!
Hi Leigh,
Thank you for encouraging me too. I will keep hoping! 😀
I’ve met Deepak Chopra as he often dines for lunch at a Four Seasons near where I used to live. He sold his soul a decade ago and is just as arrogant and dismissive of women in general now as he was when he wrote these lies about RA 12 years ago. I’d like to see a writer as well-known as Chopra rake him over publically for harm such misogynistic characterizations have perpetuated. It’s the whole “women are hysterical” myth all over again played out in the auto-immune area like needless hysterectomies were for years. ENOUGH. Speak-up and end this insanity. Don’t feel bad, get mad, and talk about this truthfully instead. You are still so much more than your illness!!!
Good point Gina. This idea seems to color the view of RA that some others have also. Did you see the posts on Pain & Pain tolerance? I was surprised when I began to realize that is how many view RA – as something with an emotional component to the cause. At first I cried; then I got mad. You’re right – we should fight back. Haha – show Deepak we can express anger.
Not the first 2, but look here to see several others on that topic: https://www.rawarrior.com/tag/rheumatoid-arthritis-pain/
Thanks, I have read the many “thank you”s that fellow ra-ers have sent. And I want to say it again as well, Thank You. Call it what you wish, therapy, teaching, venting, etc.
Its all of the above. And I appreciate it.
I was speaking with my aunt that is recovering from a stroke. She was telling me that she wanted to do something herself and fell down trying. I heard myself telling her its okay to ask for help. Then I told her that asking for help is sometimes the hardest thing to do. It is for me.
Hi Stacy, yes that’s right. And isn’t it interesting how we hear the good advice we also need while we are giving it to another. It’s easier to have compassion on another & see that comforting word they need. We need it too. :heart:
I just wanted to say that I have been newly diagnosed with RA. My husband thinks it is in my head. My mom thinks it will go away. And my sister doesn’t want to talk about it. So I was really frustrated. I found your Facebook and blogs. It has really made me feel alot better about myself. I know that I am not the only one suffering from these same problems. I appreciate reading everyone articles. I have probably had RA for ten years but have been treated thinking it was Lyme. The pain never went away. It wasnt until my doctor did more tests that we realized it was RA. I had blood tests in the past but they were always Lyme related. It always came back negative for Lyme, but I was given antibotics anyhow. Thanks for the support that the website and blog give me. Unless you live with it, you do not realize how hard it is somedays. Other days are great. But alot of not so great days.
Hi Debbie.
I’m glad you were finally diagnosed and treated. That is frustrating. I don’t know why it’s hard to get a dx, but it seems it is.
That is very hard with family members who don’t understand or won’t “get it.” It makes it harder, doesn’t it? Have you ever sent them anything to read? Sometimes people find jsut the right post & click the email this post button to send it. Made me laugh to think we might have some of the same family issues – are we related? Hahaha.
I have tried to educate my husband and family members, but they really do not want to hear it. When I am having a really bad day, my husband will shoot back. “I am stiff and in pain too.” I almost feel like I have to suffer in silence. I am on Plaquenil which has’nt really done anything yet. I was just diagnosed in July and have taken the medicine for just a month. I have shown my husband the blood work showing that I have RA. But he is convinced that it is Lyme still. Yes, it is frustrating but I somehow everyday get through it…. in silence. My aches and pain are not longer verbalized. I have another Doctors appointment in September, so I will see what he says. I love your Facebook and Blogs, because I can see what everyone is going through and their treatment. It has meant alot to me. I have sent away for brochures from the Arthritis Foundation on RA. So hopefully I can have my husband and family read it.
Thanks Again
You’re very welcome Debbie. Many of us have been there, too. Did you ever think of taking him with you to talk to the rheum doc? Maybe he’d get a better idea that this is serious stuff? Maybe the doc will add another dmard in Sept. if the plaq is still not working. That’s a long time to wait in silent pain. :C
Hi Kelly,
To me:
This site is like a warm blanket on a cold night, a good laugh when you really need it, a good cry when you REALLY need it, the feeling of someone else beside you, pushing your chin up when no one else is there, the warm feeling you get from hot cocoa or a SHOT of whiskey, the knowing you are not alone, when you need someone to understand or just to listen here you are. My corny little heart could think of so much more, but most important this site is written by one great gal who helps us remember we are all different, but together we are one as we continue on this journey. We are all learning how to manage our way through this RA, but one shining light is you girl! Thank you Kelly! Despite your pain you are always here and for that I’m sure everyone is grateful!
Rosie, what lovely words. :rainbow:
I was diagnosed with RA about 2 years ago, but so far , the only treatment I have received is Ultram for pain, an nsaid called Mobic,and the occasional Flexiril.I have fibromyalgia as well, and take 600 mg.’s of Nuerontin two-three times a day as needed.I have no insurance, and go to a local clinic ,where I see an m.d., thus, no treatment.I am curious about the drugs that say , it will stop the progression.Do they really help ?The side-effects of most of them are really frightening.
Kalleen, I’m wondering if the doctor has talked with you about treatments and how most of the manufacturers have programs which offer assistance with the really expensive RA drugs (biologics). There are websites to apply for assistance if you don’t have insurance. Also, the most common disease treatment, menthotrexate is generic and pretty inexpensive – I know I’ve paid cash for it several times. When I had to use a local health clinic in the past, there was a pharmacy there. Does yours have one? I wonder if they would help you get methotrexate or another dmard if the doctor presribes it. Just a couple of ideas – I feel bad that you haven’t had options for treatment. Side effects can be a problem if they do happen to you, but for me, they would not be as bad as the damage RA does, so that is up to you and your doc to decide. Good luck.
I am late to the “party” I know but I just wanted to know how much your writing has meant to me. I was diagnosed 4 years ago and am on my 3rd biologic-actemra. I am starting to see some relief, but of course we never know how much or how long these things will last. You are a great source of information and inspiration . I am not sure how you keep doing what you do, but I sure hope that you can carry on. We need you.BTW, I live on the other coast of Florida.
I think what you do on this blog is wonderful or at least it has been for me. I don’t always understand the medical lingo but it has given me so much information that I feel I can ask my doctor some rather intelligent questions. Thank you for all the effort you put in to it. I am so sorry the meds aren’t working for you like we all hoped it would. Have a very blessed day!
Kristi
Trust me its a lifeline Kelly!
A place to receive realistic information, genuine support and true understanding.
RA is lonely & scary we need each other.
Thanks for all you do.