It came from your heart and your mind, and it touched something in me. You are so right about this "acceptance" being an ongoing struggle. Sometimes I am fine with it. Actually, most of the time I am fine with it. But....when I am really hurting, and I can't walk very well, and every movement brings agony....those are bad, dark times for me. I was in so much pain and so depressed this past weekend. I couldn't talk for crying. The prednisone and Celebrex brought me back, but I never want to go there again, Lene. I was afraid of my own thoughts. I now know what it is like to be afraid the pain will come back full force again. I get up gingerly each morning now, and move slowly. I take an inventory of my joints. Let's see, the shoulders are painful, but I think the Celebrex will losen them up...hands aren't too bad today, knees are okay for the shape they are in, etc etc etc. I'm always looking for that "special" hint of pain that may signal the coming onslaught. It is scary. I have learned through this experience to not waste my time on doctors who don't get it, don't care, and won't help.
Peace to you, Lene.
V
Oops! I forgot to say what I would do if I didn't have this painful arthritis. I think I would volunteer my time more. That makes me happy. I would can more vegetables from the garden, I would get all the painting done, I would have a spotless house. Thing is...those kind of things aren't really important at the end of the day. Being able to enjoy things with my husband and helping others is what makes me happy. I should always be able to do those two things, as long as I can keep a handle on the pain. Thank you for this great post, Lene. You are an amazing person, and I appreciate you so much.
Blessings,
V
another place. It's really scary there and to me, the goal of medication, etc. is to keep you from that scary place. However, once you've been there, you never forget it and I always have a sense of just how precious life is.
The volunteering may still happen. Right now, all your energy is going to dealing with your illness. Hopefully there will come a day where the doctors find a way to help you get out from under that and then you will be able to use your energy on other things. In the meantime, you're right. Focus on what you have, enjoy what you have and keep away from the scary place.
Lene,
I think it has been a rough winter for everyone, but Spring is almost here and the birds are starting to chirp every morning at sunrise. It is a new day!
When I read your posts it makes me feel sad that you are feeling down and count my blessings that I can still walk even though it is only for short distances. I know what you mean about wishing it was something more, but then I look back on all the years I could walk and dance and the wonderful, full life I was able to live before I got RA and think how lucky I was to have had that.
I too am trying to adjust to what I can no longer do by adding new things that I can do. For example, I can sit in my chair and bead beautiful jewelry and I can still type so I am taking a creative writing class through an adult education program at the local state college. I can still swim although it is getting harder to cup my hands and I don't go very fast, but I can still do it. When my hands are good I can knit and paint although it is not as often as it used to be.
You are able to type your wonderful, informative postings to HealthCentral and you are helping many people by doing so. It is a purpose and you are still very useful. Have you thought that this is what you were meant to do - help people? AND how important you are to all of us?
In the meantime, I think it is really important that we all try to help ourselves by doing the Arthritis Internet Registry which is trying to do for arthritis what the Framingham Heart Study did for Heart Disease. They are trying to get 100,000 people with arthritis to help their study and they are going to try to figure out the DNA to generate better medicines. If interested here is the link: http://www.arthritis-research.org/ There is a brief questionaire to fill out and at some point they may ask for some blood for DNA analysis. It seems like a simple way we can all help each other.
Again I hope you are feeling better and I send my love,
Deana
thank you so much for your kind words. As I mentioned in my post, I am normally a very happy person, content with where I'm at and in many ways, happier than I was when I had less pain and more function. The trick to staying that way is exactly what you mentioned - focus on what you can do, focus on finding meaning in the everyday and for me, that definitely includes MyRACentral.
Thank you also for information about the Arthritis Foundation. I'll look into it and you'll probably see something about it in the next month or two.
Lene,
This is an absolutely beautiful post. I especially liked this:
It's easy to get stuck in believing that RA is all that stops you, the only reason you cannot do this, that and the other thing. And although that may be true if you wanted to become a trapeze artist, mostly it's a scapegoat that keeps you from dreaming new dreams, from finding joy in your life as it is. Everyone has limits, whether they live with a chronic illness or not and the trick to finding happiness is to make the best of the life you have.
People have often been surprised when I say that RA hasn't been all bad. Because of RA, I have learned new things about myself and met amazing people. It has opened me up to brand new things - some bad and many good! I think it is all a matter of how you look at it.
Thanks for sharing such a powerful post!
Cathy
i have a lot of health problems so do my children and my husband.1 is RA. we researched it because the doctors said that my husband's next option was ampution of his leg. that was not an acceptable option.
we found out that if you reduce the level of acid in your body to a lower PH level the RA will improve. also you need anti-inflamatories.capsasain is good and can be accessed by eating hot peppers,or taking them by capsule.start small and work your way up to where your pain is reduced.
you can get diets to regulate your acid/alkaline ph balance on google.
all of this is dietary and should not cause a problem with any medicines. just to be on the safe side call the dotors to make sure all is okay. they can not tell you if it will work because they are limited on what they can say by the FDA rules. however they will tell you if it will cause a problem with your medicines.
remember if you give up you will only get worse.if 1 road does not give you answers , try another road the answer is there you may just be looking in the wrong place. thier are a lot of different kinds of medicines.from many different countries.try japan medical arts and india. i have heard that there is almost no RA cases there at all, on account of their diet.
Thanks Lene, for such a wonderful post. After I read your post, it dawned on me that I spend a lot of my "free mind time" thinking backwards and wishing things were as they used to be or were better. That is so counter productive. I need to work on being happy in the now and accepted things as they are and accepted the good that is here and now. You are the best, Lene. Thanks again.
Thanks so, Lene
You can print this post every other month and it will always be fresh. This is another of the posts I didn't get, but found thru Lisa's post. Anyway - I did a year of counseling after being diagnosed. The counseling office could not grasp that I can and have accepted for 29 years the belief that I need AA & NA; faithfully go to meetings all these years; stopped partying with friends at the bars, etc - but I could not grasp acceptance of living with a chronic illness and having to give up all I'd worked so hard to achieve. All the plans I'd been building towards for my senior years, teaching other baby boomers how to stay active and joyous - and the 'if onlys' set in leaving me overwhelmed and sad.
Not the way for me to live - and thru counseling, this site, wonderful medical help and loving friends, I don't so often now sink into the 'if onlys'
Thanks so, Lene, for bringing up this topic.
Laurie
Oregon Coast
I think it takes someone specializing in counseling people with a chronic illness to understand that you can on the one hand accept an addiction and on the other, be completely lost when faced with RA. Admittedly, I don't know as much as I should about AA, but I do have friends who are in the program and from the talking I have done with them, it seems as if it's to an extent involves a matter of personal will. Yes, you face that you are powerless in the face of your addiction - and that is similar to living with an autoimmune disease - but several of the steps involve practical things that you can get up in the morning and do to help your recovery. There is, I assume - please correct me if I'm wrong - to some degree something you can do about it. I guess you could superimpose the AA model on living with RA - what you do about it is to go to your rheumatologist, to push for treatment, etc., but ultimately, there are no meetings that can help you not flare. There are communities like this one where you can get support to live through the flare, but no amount of talking to people here will stop the physical process of flaring. Medication might, but not always.
I got philosophical. Am I on to something or completely out of left field?
Hi Lene
To some extent I can indeed apply the principles of AA to living with a chronic disease. But nothing can prepare me for the onset of a flare. Surviving the flare is better by coming to this community of other RA folks. What I need to learn are the triggers of a flare and arrange my life around that. That's where the AA lifestyle helps. You're close... Laurie
Hi Lene
To some extent I can indeed apply the principles of AA to living with a chronic disease. But nothing can prepare me for the onset of a flare. Surviving the flare is better by coming to this community of other RA folks. What I need to learn are the triggers of a flare and arrange my life around that. That's where the AA lifestyle helps. You're close... Laurie
Triggers tends to vary from person to person, although many people experience an increase in symptoms with changes in barometric pressure, rain, eating sugar, fried foods or foods in the nightshade family (tomatoes, potatoes, eggplant) and of course, overdoing it. You may want to keep a diary for 3-4 weeks or so where you write down how you feel, your pain levels, what meds you are taking, what the weather's like, what you ate, etc. It sounds like a bit of a pain, but it can help you identify patterns and possible triggers.
Hi Lene,
Did you read the article on page 91 of Arthritis Today's May/June 2011 issue called "Superstition vs. Science?" It basically summarizes that many of the "good foods" or "bad foods" are myths, including stating, "THE MYTH: Nightshade vegetables aggravate arthritis," and "THE MYTH: Dairy products make arthritis worse." It's written by a freelance writer, and does not state an M.D. or other clinician credential. It was interesting to read this information contrary to what most Naturopaths/NDs encourage as a definitive dietary regimen for RA. I personally saw no difference in my inflammation by removing dairy or nightshades from my diet, but that was just my personal experience.
At the RA forum I attended last year, Dr. Keystone mention that there is no persuasive evidence in favor of one diet or another for RA, yet indicated that if people feel that something works for them, to go ahead (adding "as long as they take their meds" 
). Personally, I have noticed a connection between an increase in symptoms and food, especially fried foods, as well as potatoes and tomatoes. Being the anal-retentive type, I did specifically pay attention to diet and symptoms for a while and it seemed to be the case. That doesn't mean that writer's wrong, just that this is the way it worked for me.
as well, in my experience many of the alternative therapies can be ahead of allopathic/Western medicine. I remember using acupuncture in the mid-70s and being sneered at by nurses and doctors (well, they sneered at my mother would took me to the treatments). They seemed to not quite clue into the fact that I would leave the hospital on Friday afternoons to go home for the weekend in a wheelchair and walk into the ward every Monday morning after my acupuncture treatment.
I've tried eliminating nightshade and it didn't do anything. I am allegic to milk protein and wheat chaff - and eating correctly definitely makes a difference. My biggest trigger is stress. It's almost a mantra by now, I walk around mumbling 'stress causes pain' and some of the expressions from others are quite amusing.
Stress, doing to much, lifting anything more than a magazine, flipping the blankets/sheets/top cover on the bed - all known triggers, and too often forgotten until too late. I get so I'm afraid to try doing anything.
Laurie
cooking me for not remembering where you're at in your quest to control your RA - it's Friday evening and it's been a long week. Is your RA suppressed? Because if it is, you shouldn't be experiencing this much pain when using your body. Unless you have been in a severe flare and have gotten really screwed up. It may be a matter of building up your muscles to support the joints, so I'd recommend you ask for a referral to a physical therapist who can help you get some strength back.
Thanks Lene
It is Friday evening; I fell today and so am altogether cranky and hurt all over. My rheumie wants me on stronger meds and I asked to wait until I'm off the prednisone. I just don't like the 'living thru it' part. no one would. But I am starting to walk a few blocks twice a week, still visiting with friends (lite gardening or playing with their 4-legged kids (pets), plus go to meetings 2 or 3 times a week.... staying busy so I don't play in my head so much. I just believe I'll get used to living with a percentage of pain on a daily basis, or go into stronger and stronger meds. What comes after infusions? I haven't found anything past things like Remecade.
Laurie
I'm about to get opinionated. Don't wait until you're off prednisone. It can bridge the transition, allow you feel to feel relatively tolerable until the meds kick in. Waiting until you're off prednisone just gives your RA more time to flare and damage your joints, so I'd recommend you hop on the stronger meds right away. I suspect - and correct me again if I'm wrong - that the thought of the stronger meds make you really nervous, so you're trying to drag it out as long as possible? I understand the hesitation - these are what I call The Big Drugs and they do, with potentially serious side effects. However, most people tolerate them well - I've been on Biologics since 2005 and they have enabled me to get my life back.
I would also suggest that you talk to your doctor about some of the self-injectable Biologics, such as Enbrel or Humira. Which biologic you start with it doesn't really matter, but you may prefer the convenience of self injection in your home rather than traipsing off to an infusion center. Of course, self injection happens more frequently than infusion. There are options to fit your lifestyle.
The good news about Biologics is that if one doesn't work, you have several more to choose from. For many people, these are miracle drugs that suppress your disease (and therefore your pain) and enable them to go back to living their life. Remission is actually possible and that's where the miracle comes in. Some of them may keep in fast - e.g., Enbrel and Humira have been known to kick in within days or a few weeks, but it's generally stated that they take 6-8 weeks. I would definitely recommend that you don't delay, but start now.
Thanks Lene
I've been taking Enbrel for 2 months now. It is just now kicking in, giving me more life, but I still live in pain and fatique. That's why the rheumie wants me to try the infusion. IS there anything past the biologics for us?????? When I researched it the other night I found 3 stronger than Remicade, but not any drugs past the biologics....
I'll see my rheumie today= it's a 90 min drive each way and the person that takes me is sick, so I'll drive myself. means my hands won't open for a few days. I'm going to talk to her about falling so badly last week, and the Remicade.
and tomorrow I leave on that bus tour - I'm so looking forward to that. I'll check here this evening and share hugs thru the net..... Laurie
right now, the Biologics are the state-of-the-art and there's nothing "above" them. However, although they are the same class of medication, they each work in different ways, so if Enbrel isn't working well enough for you, another of the Biologics might do the trick. You don't necessarily have to go to something "stronger". That said, it is quite common for people to be on Enbrel and methotrexate at the same time, as the combination therapy can kick more butt than Enbrel on its own. I've also found that a small dose steroids can take Enbrel from working well into working great. It is my impression that Enbrel and Remicade are sort of similar in a way some of the others are not, but I could be wrong. Is your rheumatologist suggesting that you do Enbrel and Remicade at the same time?
good luck! When your fingers unclench, please let us know how it went. And don't forget to enter our Week One contest!
Hi Lene
Pretty day, I drove home on the back roads thru the countryside, not on the fast highway. Lite sprinkling rain, a bit of sun, beautiful springtime woodland scenery.
I talked at length with my rheumie today about the fall being so pain filled all evening and finally taking more prednisone so I could rest. She didn't like that much, but saw the value and that I went right back to 4mg the next day. When I pressed about the infusions vs self shots, she told me Enbrel is a 1 dose, can't make larger or smaller mg/day where as Remicade I can start small mgs, and add up to whatever is needed with the rheumie's help. But more than that she told me that with any of the biologics another pill is needed that sort of aids the curative value of the biologic. Most RA folks take methetrexate or arava = both of which I had a very bad reaction to. So will try a new one called cellcept - starting with small dosage and building up to see if this helps lessen the pain and fatigue with the Enbrel. And if I do get along well with the cellcept, then maybe switch to Remicade. For now thou, she told me to say with both Enbrel and 4 mg/day of the prednisone, and add in this new pill. I'm so glad she listens, debates, shares insights, is willing to try new ideas - and was glad I quit taking the psych meds that had me walking into walls! I am actually starting to enjoy living again - now we just have to lessen the pain and fatigue. and STOP falling down. 
Laurie
I heard Michael J Fox in an interview once. He was asked about the quote you mentioned above, Lene. He said (paraphrasing) that he accepts the way things are right now, but is not resigned to the fact that things won't change.
I love that line of thinking. I need to think it more often. Thank you for sparking my recall.
Acceptance is complicated. The definition outlines what is hard about it for me... I want more than what RA offers (heh and sometimes far, far less that what RA offers... That old abyss and all...). I think we all do -- we had it before, why can't we still have it?
To me, that's where MJF's genius comes into it. Right now, we get what's offered. Ok, I'll take it. However, I'm not at all ready to say that's the end of it.
Here's another quote from MJF, and in my experience, Lene, you already have this part down:
"I can't always control my body the way I want to, and I can't control when I feel good or when I don't. I can control how clear my mind is. And I can control how willing I am to step up if somebody needs me." Michael J. Fox -- http://www.esquire.com/features/what-ive-learned/michaeljfox0108
(hehe 25 years ago, who would have believed MJF would be such a guru?? lol)
Berserker! You're back! I've missed seeing your words around here, so I was real treat to see your comment.
I quoted Michael J Fox in another post: "I don't have a choice of whether or not I have Parkinson's: I have it. But other than that, I have a thousand choices, and I can't let myself be sunk by the weight of that one non-choice..." His books are really good, as well.
if there's one thing I've learned from having RA for 40+ years now it is that it adds and flows. There is always change. the bad times can go on for quite a while, but eventually, you do come out on the other side. It won't look like your life did in the past, but it will still be good, sometimes even better than it used to be.
p.s spoons? I don't need no stinkin' sponns!
Hi BeserkeRA
I love that you quote MJF. I've read a couple of his books years ago before I was diagnosed, but need to read them now too. This last quote you put in about can't control his body, but can control his mind - - I'm working on that. If I can get my thinking turned around; start walking just for walking sake again, share who I am today with others, take care of me and look 'up'.... what a difference my days have become. It's a slow process, and I'm just beginning - but so so worth it. Thanks so@! Laurie
Hey Laurie,
Yeah, for progress-oriented people, getting active again can be a struggle. I'm used to setting superman-type goals for myself and working hard in the gym, etc., where I can see fast progress. Having to switch my head around to accept conquering a walk to the end of the driveway is fraught with its own challenges hah!
I did read something somewhere about goals in RA (I think from M.E.A. McNeil's book) that suggested setting goals you can do everyday, regardless of how you feel. E.g., instead of having a goal that says you will walk a mile a day, have a goal that says you will set foot outside the house. Then on bad days where 20 feet is a challenge, you go out the door, turn around and come back in and, voila, you've kept your momentum and progress.
If only my stubborn scandinavian brain would accept that advice haha :)
Thanks BersekeRA - that's what a few non-RA friends have told me too; if my goal for today is getting dressed, I'm victorious; if walking around the outside of my apt building is a big push, maybe only to the front porch is enough. But like you, it's tough to wrap my head around that. BUT that is exactly what I'm doing in order to get back to daily walking. I can't pay for the gym, little towns are like that- but I live in an outdoor wonderland. One step at a time.... Laurie
I have RA, not for long (by diagnosis), but nonetheless... I Have RA. Right now I still am wrapped up in the If Only's... hard to get a way from. You could actually say the RA has me right now! I am trying to figure out how to live with RA rather than living in the clutches of RA. 
Lene, your post is eloquently put and I am trying to get to acceptance and onward.... It's gonna take me a while, but I will probably read this again and again, so thank you.
Hi Lene
You really opened a bucket of worms - touched everyone in our community. I find your abilities to help and know what topics to pick so powerful, insightful. It's past my acceptance to think you've had RA since you were 4.... All the things growing up girlhood holds, young woman into middle years.... I'm stunned at your wonderful strength. I feel so lucky you are part of my life@!!!!
Laurie
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Hey Lene
Well you have really touched me today with this post of yours. It can be bittersweet to think of these "if onlys." I think an important part about acceptance that you are pointing out is that it can be an on-going process as in...life-long. Even if you have had a condition for years and years...there are still moments in life where you do reflect and you do think about "what if." And I think it is perfectly normal to do so. It is only when we get stuck in that place...and it prevents us from living the life we do have is when we may need a little help.
I think some people equate "acceptance" with a giving up. I think this is so far from the truth. I see it as a portal to finding happiness in your life no matter the circumstance. It is a universal process for us all. Everyone is going to have something happen in their life that...will totally cause you to adjust your expectations. For me...some of the major unexpected life happenings were my youngest son being diagnosed with autism and then my diagnosis of Multiple Sclerosis. Who would ever dream of these things happening? I am sure that when you were a little girl...you and your family probably never expected you to have RA. But life is full of such "surprises."
How does one accept the unimaginable? It is a grieving process for sure...you go through all those stages of the anger...the denial...the sadness...sometimes all in one day. There simply isn't any textbook to tell you how to accept RA or any other disorder. So we have to wing it the best way we know how and by getting emotional support.
A little story...
Right before I was diagnosed with MS...I kinda knew that I had it but was still hopeful that my doctor would call and say..."Oh don't be so silly...you don't have MS!" It was a "shrodinger's cat" moment in time where two realities exist at once...I was thinking that I had MS and also that I didn't have it. I told myself that if I didn't get the diagnosis of MS that I would run a marathon in gratitude. I also told myself that if I did have MS I would still run a marathon just to show I could despite the disease.
When I got the call and found I did have MS after all...part of my acceptance happened right then and there when I thought, "Oh hell no...I am not running a marathon! I don't even like to run!" There is this thing that...people are supposed to climb mountains or run marathons when they get a disease...sort of as an "in your face" to your disease. And that is fine if you are already doing those sorts of things. But I have never enjoyed athletic endeavors. It goes to show you that you never really know how you are going to feel until that time happens...when you get the diagnosis. Part of my early acceptance was...that I am still me...the unathletic person that I am...just with MS. I don't need to prove anything...I just need to be me.
I am still me...me with MS.
One other thing I want to say about acceptance is...you don't wake up one day and say..."Oh this is all totally fine with me." It isn't like that. You mourn and grieve at periodic times in your life. I think sometimes people who have a chronic disease or medical condition feel this pressure to be super positive. As though we are supposed to be more happy because we have a disease. But there is sadness...sometimes depression...and to sugarcoat things...is to sometimes deny the reality of what we are really feeling. It is okay to get mad about it. It is okay to mourn the losses. But again...the key is not to get stuck in that place where everything is gloom and doom. You can live a very happy life...it is just not what you may have expected but life seldom is...for anyone.
Sorry for the novel...it is just such an excellent topic. Life is the continual process of acceptance. You have written about your experience so well...it just got me to thinking about my own life.
I would be most eager to hear from your members about how they go through this process of acceptance. I will be sure to tell MyDepressionConnection members about your post as well.
so many thoughts running through my head. I do beleive the one thing i would do better an still doing is getting close to GOD an bring people to an closer to GOD. an teach my kids to give more. material things dont matter an i have never took them for granted.i always wanted to feed an help the people that didnt have much . what God has given us isnt really ours he gave it to share with others. God has given us all something to do or share.when do we reallize it. God bless everyone
I love that story! and you're absolutely right, there is this sense of "and now what will you do to prove that you're still a normal person"... actually, it's more like "what are you going to do to prove that you are somehow able to do more than everyone else" and if you don't like to run, why on earth would you?
Excellent comment. Thank you so much.
Suzzy - it is part of the acceptance process, finding this connection to what's truly important and something. I see a lot in people who live with chronic illnesses. The surface stuff, the material goods don't matter as much anymore. Love matters. Laughter matters.
Thanks for your comment!