Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
This is a vent, and I think you all will "get" it.
I have a wonderful group of well-meaning friends. They all know about my condition, which my mother and my mom's mom also have (my grandma had all her knuckles replaced several years ago and has severely deformed hands).
Nevertheless, I keep getting these emails and such about WONDER DIETS that will PURGE MY SYSTEM of the RA. How if I eliminate fungus (mushrooms, antibiotics) I will heal. How if I give up this or that or balance my chi or add yin to my yang or take up underwater basketweaving that I will have a miraculous recovery. PUH-LEEZE!
Did I drink too much Diet Coke? Was it my years of smoking cigarettes in college? I didn't start eating red meat until I was in my 20s. Maybe I should've never started?
I don't know. I'm just so FRUSTRATED. I don't want to waste time on wondering WHY or HOW the RA happened, because I now I have it and I have to live with it.
I am all for trying anything to help. Hell, I'm even trekking to Montana to see a Native American shaman this summer to see if he can pull the negative stuff out of me :-)
But I feel like people are looking at me with question marks in their eyes, peering into my soul, wondering *if* anything is wrong with me.
Maybe this irritates me so much because I wonder the same things, too. Sometimes I wonder if anything is wrong with me.
I see my swollen hands and have my pain dreams when I'm asleep and in pain. I have the flares and I cry when it hurts and I feel defeated by RA. But I can't help but wonder ... what is it?!
I am sero-negative so far (dx'd six months ago). My sed rates were up, but then went down at my last test. I want PROOF. I'll take a deformity. I'll take a positive test of any kind. I just want to know WHAT IS WRONG WITH ME.
And I want the people I love to quit questioning it. I don't have the energy to try every stinkin' diet, fast, medication or method. I am TIRED (the doctors call it "fatigued") and I am SORE and I just want to make it through the day and change my baby's diapers and get dinner on the table and clean clothes in the drawers.
Can't I do that in peace, without having to wonder if I CAUSED MY RA?
Grrrrrrrrrrrrrrr.
Love you all, my kindred spirits. And for what it's worth, I am not in any way putting down wonderful fellow RA'ers like Sarah Kuterah who has so bravely and intelligently researched alternative medications. She has opened many doors for us, and I want to thank her for that. This is strictly a rant about non-RA'ers who want to do well by us but instead plant the festering seed of doubt in our minds.
Soft hugs all,
Lisa
I have a wonderful group of well-meaning friends. They all know about my condition, which my mother and my mom's mom also have (my grandma had all her knuckles replaced several years ago and has severely deformed hands).
Nevertheless, I keep getting these emails and such about WONDER DIETS that will PURGE MY SYSTEM of the RA. How if I eliminate fungus (mushrooms, antibiotics) I will heal. How if I give up this or that or balance my chi or add yin to my yang or take up underwater basketweaving that I will have a miraculous recovery. PUH-LEEZE!
Did I drink too much Diet Coke? Was it my years of smoking cigarettes in college? I didn't start eating red meat until I was in my 20s. Maybe I should've never started?
I don't know. I'm just so FRUSTRATED. I don't want to waste time on wondering WHY or HOW the RA happened, because I now I have it and I have to live with it.
I am all for trying anything to help. Hell, I'm even trekking to Montana to see a Native American shaman this summer to see if he can pull the negative stuff out of me :-)
But I feel like people are looking at me with question marks in their eyes, peering into my soul, wondering *if* anything is wrong with me.
Maybe this irritates me so much because I wonder the same things, too. Sometimes I wonder if anything is wrong with me.
I see my swollen hands and have my pain dreams when I'm asleep and in pain. I have the flares and I cry when it hurts and I feel defeated by RA. But I can't help but wonder ... what is it?!
I am sero-negative so far (dx'd six months ago). My sed rates were up, but then went down at my last test. I want PROOF. I'll take a deformity. I'll take a positive test of any kind. I just want to know WHAT IS WRONG WITH ME.
And I want the people I love to quit questioning it. I don't have the energy to try every stinkin' diet, fast, medication or method. I am TIRED (the doctors call it "fatigued") and I am SORE and I just want to make it through the day and change my baby's diapers and get dinner on the table and clean clothes in the drawers.
Can't I do that in peace, without having to wonder if I CAUSED MY RA?
Grrrrrrrrrrrrrrr.
Love you all, my kindred spirits. And for what it's worth, I am not in any way putting down wonderful fellow RA'ers like Sarah Kuterah who has so bravely and intelligently researched alternative medications. She has opened many doors for us, and I want to thank her for that. This is strictly a rant about non-RA'ers who want to do well by us but instead plant the festering seed of doubt in our minds.
Soft hugs all,
Lisa
When I had the first RA attack it hit me over a period of days. It started in my shoulders and moved on to all my other joints until I was at the point I couldn't move without causing myself more pain. It got to the point that I just layed there and moaned. It must have been pretty bad because for the first time in 30 years my husband picked up the phone and made a drs appointment for me.
He took me to the dr and she said RA and gave us information about it - but of course she sent me to a rheumy for confirmation, along with blood tests. So my husband has never doubted or questioned my RA which has been a blessing.
The one thing my hubby does question tho is the number of medications I'm on. I keep trying to reasure him that my two doctors are in constant contact and they both know what I am on and why...and that the meds are necessary, but for some reason it really bothers him and that can be difficult sometimes...
I guess people just need to feel like they can be in control of their lives and that there must be something they can do about the problem whatever it is. Wouldn't that be nice if it were true....?
I saw that you added Endometriosis as an autoimmune disease. I have NEVER heard that one! I am supprised because I have endo and RA. In all the research I have done, I never seen a connection. Do you have anymore info on this? I would love to chat with you about it, or can you set up a post about what you know.
Back to Lisa, we did NOTHING to make ourselves have this. Guilt is a strong emotion that comes with it, sorry to say. Know that we all share your frustration!
Gentle hug back to you.
Until the health promotion researchers publish evidence that RA is a preventable disease and that there are active strategies we can do to deter contracting RA, we sadly will continue to have to expect these sort of questions or statements. Have you ever seen on a billboard or on public posters? -
"Prevent RA - eat more vegetables and fruit"
or
"RA kills - find 30 minutes to exercise each day"
or worse still
"Prevent the spread of RA - wear a condom"
No, and we never will!
I guess our job from here on in is to give factual information about RA to those who ask and stand up to mumbo-jumbo, snake-oil unproven remedies that have no proven basis. Self-blame should never have to be considered by an of us.
MammaLisa, chuck all of our seeds of self-doubt out with the babies bath water, for all of our sakes! Thank you and all the best.
Lynne
This whole thread is really helping me to see that 1) I'm not crazy 2)My diet probably didn't have anything to with this and 3)I have a disease, not a diet-related condition.
Thank you so much.
Karen
good post, and thoughts I've been struggling with too--- what did I do or what didn't I do, to bring on this problem? For a year, since the pain began for me, I thought "if only I could...lose weight, eat right, exercise more, yada, yada etc." But I'm slowly coming to terms with those ideas now. I asked my rheum. about estrogen deprivation or a virus as a possible RA cause- she said no one knows WHY you get the disease and many things can trigger it, everybody is different.
Anyway, I'm sorry to hear about your frustrations and I can't imagine how hard it must be to take care of a new baby on top of everything else... hugs, Susie
I'll be sure in the next day or so to put a post about autoimmune diseases and help shed light on us all that 1. Autoimmune diseases are pretty common 2. If you have one autoimmune disease, you're likely to get more 3. Autoimmune diseases vary so greatly that you don't even think about the fact that they're all related.
As well, another thing for us all to keep in mind in what to say to people who are ignorant on what RA is:
RA is a severe disease. When toddlers get RA, there is a 10% chance that they'll go blind.
People often mistake RA for normal arthritis. Unfortunately RA is very severe and can cause organ damage, among other things. I use to experience Pleurisy on a daily basis from RA and long ago I got pleurisy from time to time, never expecting it to lead to this.
It's important that we realize the severity of our disease, so we can take proper steps to keep it under control and keep ourselves from developing more.
In this sense, diet and exercise are crucial. Believe me, I fall off the wagon on a daily basis....I am no angel. But it's important that we think to ourselves every day, "I need to be the healthiest I can be", not just for our RA but for the years we have left on this earth so that more autoimmune diseases don't plague us in the future. I'm still trying to figure out how to eat right everyday.
Here are some good rules to follow:
1. Don't consume fake sugar....it's been shown to lead to cancer and FDA finds as many loopholes in this money making business as possible. If you want to read real studies, Universities are your best options because they're in it for research, not the money.
2. Buy organic.
3. Wear gloves when you use chemicals in the house.
4. Get lots of rest.
5. Drink lots of "clean" water, don't just use a filter. Copper can cause RA symptoms and it's in our tap water!
6. Take probiotics because our gut is 75% of our immune system, (you can get them over the counter).
7. Don't eat your lipstick...women consume 4 to 9 lbs of lipstick in a lifetime!
8. In the end, reduce your stress as much as possible.....watch funny films and have good company. That's really the most important. Set small goals and reach them, but never ever think to yourself that you caused RA. RA is on the rise right now, so it's more likely environmental factors at the route of this issue.
Sincerely,
Sarah