THANK YOU!!!! I could not agree more and I doubt I could have said it as well as you!!!
I appreciate all the love and support people are sending out to me when they make suggestions, but honestly, there's a limit.
I'm not to blame for my AI disease.
I'm not going to be able to just 'Tough it out!"
And while I'm fighting it every darn day, I'm way sicker than almost anyone realizes. They don't know and they don't understand, because I'm not willing to dwell on what's wrong with me. I smile, nod and keep going.
But the subtle disapproval, implying that somehow I could make this go away, if I just tried hard enough *sigh* Yeah, I don't think so.
Thank you for posting this, Sara. It hit a nerve and released some pressure that had been building up.
Thank you. I've wanted to say that directly to the occasional post that is definitely more advertisement than personal experience, especially since I noticed that most of the people who buy into panaceas are desperate sick people like me, not people who have discovered (or lucked into) the secret for amazing health.
Hi Sara,
i thought I was the only one that got annoyed that got annoyed at things that never bothered me before, I take Tramadol, at night not that I want to but because it is the only thing that generally works at night , i take Tylenol in the day time to take the edge off, but some days when it's damp, I can't seem to get comfortable, it's like a pain that's there ready to erupt some times I end up on the floor and it might work and again sometimes I'm up more than I'm down then the next day I'm tired out, i didn't even know that I had the Arthritis in my spine I thought it was just a pulled muscle but it was getting worse every day, and every now and then I feel a pain in my left side as well as my right side like I did when I first started having thepain. it's kind of scarry at times, not knowing what's going to happen next.
I have a question for you What is Ayurvedic, the chiropractor I had down in Lowville , he did this treatment that sounded like a stapeler down your back, an that worked for me, I so far haven't seen any since I got back up North, I don't like it when Chiropractors snap your neck, I don't think it is good for the neck it's like geting whip lash from a car accident. I don't like taking alot of mediction as it's scary, as I takeThyroxine, cozarr so I get leary with the side affects of all these prescriptions, they prescribe, I can't take Celebrex as it makes me sick to my stomach. I can't even take vitamin b, I jus figure I must have enough from vegetables, I usually checkwith my brother as he is a pharmacist he said alot of these doctors don't know about the pills they just prescribe and don't know the side affects, alot like St. Johns wort, I can't take because I take thyroxine and it doesn't go well, and I talk to the pharmacist, or I wouldn't have known.
Have a good night .bearlover
Hi,
ayurveda is an ancient form of medicine that is practised in India.
I am an RA patient and my first treatment was thru ayurveda.
the medicines are very bitter ( the original ayurveda meds always are. )
they are more of concotions and not tablets.
they have various ways of massages which is basically different ways of applying heat on ur body. its completely natural, zero chemicals. they also use gold. i have eaten loads of gold.
For me, it worked for two whole years. I went from 4 pain killers a day to none.
Regards
Roshni.
thanks, Roshni!
Bearlover-I myself haven't taken any ayurvedic medications, but I have done some of the massage treatments, which I've found helpful. Finding the right combo of meds/treatments, etc. is tricky. Sounds like you are still in the midst of trying to figure out what works for you. Good luck-
S
Hi bearlover/anonymous ...?
Re: chiropractor going up and down spine. He/she uses an 'activator' in place of manual adjustment, because they can control (by setting it) how much pressure is used, and there is less chance of injury or 'overdoing' it. I used to have a chiropractor do the neck twist on me, and it worked well - until my muscles became too stiff, and then it injured me, instead of helping. Since then, I only allow the activator to be used. and it helps me too (most of the time), - BUT - before he does the adjustment or uses the activator I have to have heat applied and electrical stim, to relax the muscles. Otherwise, it's not a good idea.
Hope this helps....
Hi Sara, This is how Ifelt last night, I ended up on the floor in the Living room , of which I lay a comforter, two reg bed pillows and a small decorative pilllow as well of course a bear throw and one with cats on which is here or thee, andyway I was up more then down as the muscles wouldn't relax, I had used ice pack tha didn't work as muscles would relax long enough for ice to work, I soaked ice crystals , only for a few minutes, that didn't work I really didn't want to take a muscle relaxer, but finally did but that didn't work either so today, I feel like I've had no energy all day long. I went to canton to pick up my Tramadol that I take at night, and the 500 mg TylenolRapid release gel in the day time. I couldhave used a new bodybut like the vets grandaughter used to say NOT Working. It has been damp and cold here, not good weather for Arithritis, I think I needed the Stimulator, but I don't have a built in Chiripractor which would have been good.
My companion ask me what i wanted to do for Good Friday,I told him that if my night doesn't go any better I may not want to do anything tomorrow have to wait and see what happens. I actually think the stimulation would have helped last night don't know.Everyone have a Happy Easter. bear lover
If all those "therapies" actually did work-then nobody would have RA. I have a friend who thinks she has RA. She actually has osteo but you can't convince her of that. She's not on any pain meds, never has a flareup and she can do anything she chooses to do but she's always saying "we just have to bare with it and do only what we can". Yeah, right like you know! She chooses not to do any work in the home, cook, clean or anything else. She sits and reads or plays with her cats and insists there her dh take her out for every meal everyday. Sad thing is he does! Can you tell this is not one of my better days?
You are spot on as someone once said. I get so sick and tired of people, most of whom do not have RA, telling me what I should do to cure myself. As to your "makes me want to puke" comment, I am right there with you. Great post!
I don't think either one of us will actually puke as I think we are pretty strong people. You are right also, we all have to find what works for us. When someone asks me, note asks me, I will tell them what works for me but always tell them to do what is best for them. As to stress-free, what is that? HaHa.
Sara,
Oh yeah. I think all of us have had the "helpful" people tell about diets and natural remedies. And if you eliminate all stress from your life, you are dead. Seriously. Luckily not all people feel holier than thou with their attitudes that if you changed your behavior you would not have RA. Thanks for the rant. You are able to put into words the feelings of many as indicated by the posts. So far all agree :)
Liz
My RA journey has lead me to try many things: accupuncture, diet, yoga, kinesiology, chiropractic and numerous RA medications. So far, not one single thing has worked completely, but each one has brought me closer to where I want to be. In the last year, I have gone off all western medications. For me, this is the path that works best for me. I completely understand the aggravation of people thinking they have the "cure" for this disease. I almost bit a lady's head off one day when she suggested a massage oil to me. But, on the other side of things, I also get people that suggest I go back on medications. I think the biggest thing is that people respect that RA or any other chronic disease is life changing and with those changes we have to make the choices that fit who we are at the time. We can't try everything or even be expected to emotionally be ready to take on everything because we are not only dealing with physical pain/changes to our body, but many emotional changes that come with the ups and down of disease. I guess I would want people that aren't going through this to realize that even though their suggestions are coming from the heart (I hope), their suggestions can drag us down when we already feel we are trying so many things. What I appreciate most is when people just ask how I am feeling or send me healing thoughts. That's enough.
Thank you! I totally agree - so many of the proselytizers of treatment A or supplement B have a very thinly disguised message of it somehow being my fault that I can't control this disease with the powers of my mind. And there are certain self-help movements - and I'm not going to mention names - that fairly blatantly implies that if I'm not getting well, it's because I'm not trying hard enough. I am trying. Trust me, I have tried for 40 years, but the bloody thing is still here.
Thanks for writing this. It was very invigorating to read. 
Doesn't it occur to anyone of these "suggestors" that the stress of trying to accommodate to their expectations might actually ADD stress to an RA patient??? Duh! I sometimes wonder if the 'lesson' I am learning from having RA is to stand up for myself in ways I have not always done - like, saying NO! for a change! Here I stand, not a step back, not a step further - until I decide to, after completely thinking and feeling my way into the situation... (is that too touchy/feely!?) To quote Shakespeare: "There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy." I may not have the answer, but that doesn't mean that the other person necessarily does! [O it's so easy to be tough in the abstract - it's the living day to day that's really tough!]
No kidding. I know most people are making suggestions from a kind place, but it is really hard, especially when you are struggling to understand all your options and make peace with them, too, to not feel judged or like you are making the wrong choice. PLus, now that I am totally comfortable with my choices, it just feels so unhelpful and presumptious. good quote! and very true.
You're right, they do mean well - well, most of them anyway! And to be perfectly honest, I have probably offered suggestions that worked for me to people who didn't want to hear it either - it's a difficult line to draw. You want to share information about options that exist, but you do risk either offending people, or seeming arrogant (the last thing I want to do!) Mostly these days I listen ... I have several friends who are a whole lot worse off than me, it's rather humbling, to tell the truth.
You're right, it takes so much to try and absorb the information, sort out how it may or may not apply to you, weigh the risks ... very difficult. Impossible to have "enough" information. And if a person DOESN't have RA, they don't realize it's not so simple, the doctors are often guessing too.
hey Sara, of course you are not to blame for your RA. That is ludicrous.
And...about the beach: if you "lived at the beach, ate perfect food and lived stress free." you wouldn't be stress-free for long because RA would follow you there. I live near the beach and have gone many times. Uninvited, RA follows me there; how rude. And you would not like trying to walk on sand... Better pack your meds if you go to the beach.
Of course, we eat the best we can and take every step we can; however, it is no cure, any more than it would cure diabetes (type 1). Thanks for stepping up and speaking the truth.
like most comments- I so agree. If I hear one more person tell me its my stressful life and poor diet is why I have RA, I will seriously puke, lol! I love that I am not alone in feeling this way. Of course I would love to be able to have the money for all that special diet foods, vitamins and massages, and I would love more time to relax but I don't! And it is not my fault I have RA. So thank you, I really enjoyed your post! 
Hi! I read about your rant on Twitter and although I don't have RA, I have migraine disease and visit my migraine connection often. You could exchange the word RA for migraine all the way through your piece, and the sentiments would be accurate for migraineurs, too! Thank you for a good read this morning and a reminder to TRY to be patient with people who don't have what we have but know all the answers anyway.
It's okay to be bugged by that.
Betsy
The RA journey is really a personal one isn't it? Like you, I get hurt and angry when people tell me that I must do this or that or even blame me for my illness. Such a mindset caused me a great deal of pain in my first marriage. He has been replaced with a far better model!
Life throws us curves and we do not always understand why. Maybe researchers like my son will in the future be able to give us more information and a response to such judgemental and hurtful comments. Until then we all have to keep plugging and doing the best we can for ourselves. What works or doesn't work for me will be different for you and others. And I'm not convinced that being on a beach with no bills and a nutrionist feeding us would not work either although it does sound very appealing...and boring after awhile!
Love this post. Totally related. Really feeling down today (sick again--very bad day) and finally decided to see if anyone else was feeling down with RA. You helped make my day a little better. Everyone I know is healthy all the time and I'm embarrassed to have a chronic condition associated with old age.
Hi Sara,
Am I qualified to speak about RA and natural healing, well I had cancer that scarred me so bad I almost killed myself but I prayed first and did not take that step. Today I council people on how to cure disease naturally because of my experience with curing my cancer. I cured my prostate cancer naturally and I worked 8 hours a day as a construction worker at the same time, no sitting on a beach and getting massages or listening to sitar music with incense wafting through the air and then prance off to teach a yoga class, I had responsibilities. This is a real world and if you want to cure a disease naturally there is real work involved, there is nothing easy about it, who told you it was easy? I cleansed and detoxed with curd coming out of me that smelled so bad it would gag a maggot. Some days I was on my hands and knees because I could not stand up the nausea was so bad. When I wasn't at work I was working on cleansing and detoxing more, there was no let up. I pushed 50 pound bags of carrots and every vegetable you can think of and destroyed one of the toughest juicers on the market at the time. My friends and family begged me to stop and just go see a doctor please. Right here was a big turning point, my liver was dumping and I turned a nice bright orange and wouldn't you know it, my parents came for a visit. I remember my mother looking at me with tears coming down and I could see my father in the background shaking his head as she said "Paul don't you know that you are orange, you have got to see a doctor" And I remember real clearly saying back to her from my orangeness "I may be orange but I have not felt so good in years, I will not stop and I will not see a doctor". I went on to completely cure my cancer. I could have gone to a doctor and let them take charge of me with pills, operations, radiation and the rest of it. That was my choice based on my experience with medicine and my research into naturopathic medicine. So you see my little message was just to get people to think that there are choices and not just follow everyone else. Love Paul
hi i cld'nt agree with you more im curently trying to apply for the disability allowance (ireland) I've been turnd down but i've appealed it I got a letter last week to tell me why I got turned down the 1st time (again) they told me I have to have a disability tht lasts for a least 1 year and tht they might re-open my case and they might not depends on the medical accessor so im very peeved off abt tht.
hi i cld'nt agree with you more im curently trying to apply for the disability allowance (ireland) I've been turnd down but i've appealed it I got a letter last week to tell me why I got turned down the 1st time (again) they told me I have to have a disability tht lasts for a least 1 year and tht they might re-open my case and they might not depends on the medical accessor so im very peeved off abt tht.
Sara,
Thank you so much for expressing your feelings!!! I have been reading your blog for over a week and I can't get enough. You are saying everything I feel. I have been suffering for almost 8 years with pain. The doctors told me it was fibromyalgia but just 2 months ago I received the dreadful ra diagnosis. I am really afraid of the medicine. I have tried mobic, and prednosone. My doctor wants to put me on plaquenil which I have refused to get filled. I stopped all my medicine because it made me sick and I had less energy than normal. I am suffering everyday but try to make it through. As of today my thumb, toe, elbow and neck hurt. So its not a bad day. Please keep up your work, you are a true inspiration!!!
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Farewell all.
I say...AMEN!!!!
Thanks!