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Comments (68)


68 Responses to “How Do You Keep the Disease from Taking Over?”

    1. Josette says:

      I try to see the positive in RA. My diet is better than before RA because it has to be. My work schedule it a little less stressfull than before RA because I know it should be. I a more present in the now than before RA because I am more aware of its fragility and limited duration. I allow myself more slack time while still doing all I need to do. Of course I take my medicine (grudgingly as prior to RA it had been 20 years since I last took an asperin. And of course I work out daily and allow nothing to interfere with my “me” time. Before RA my friends and family would get irritated by my attention to self. Now I am forgiven because of the RA. So try to find the silver lining.

    2. rawarrior I’m so discouraged today. I’m taking new meds and still not changing. I just want to feel good. I feel like a truck ran me over!

      • Just know you are not alone. I think all of us can sympathize with the feeling of being ran over. Sending you a hug and positive energy your way and that your medications will work for you soon.

    3. Marge says:

      Just reading this RA Warrior post makes me feel a little better. Wonderful idea. Can’t wait to visit the carnival.

    4. Mandy says:

      Since being diagnosed, I have been trying to see all of the positives I have in my life instead of dwelling on all that has been taken away. I now enjoy the simple act of making dinner or a special dessert on those days that I am up to it. My diet is much better now since being diagnosed and those extra pounds that I had been carrying are no longer with me. I try to laugh every day (even if I am not feeling well) as the alternative is simply not an option for me. RA Warrior has been a life saver for me as I get to read the stories of others and realize that I am not alone in this fight.

    5. Write for Kelly’s Blog Carnival. RT “rawarrior: New Post: How Do You Keep the Disease from Taking Over? http://t.co/RujJIoodXx #rheum”

    6. I am only 2 years into this painful disease. Friends and family keep me going mentally. I watch what I put in my body, bee venom therapy for the pain, yoga and reiki allows me a moment to slow down and take care of me. Most importantly, every few months I go dancing with my husband. It allows me to rejoin the living for an evening. Something we used to do all the time. I will not allow this to strip away every thing I love to do.

    7. Rhonda says:

      Movement!! The first thing I feel in the morning is PAIN. Morning is when I hurt the most. Any kind of movement sends riveting pain all through my body. I keep my morning meds on my nightstand in a sealed tight bottle. (I don’t have any little ones at home). I first take them and get up and get moving, no matter what my wants. After I get moving, I win the pain….the pain never wins because I don’t let it. My Physician recently prescribed me the Lidoderm patch, which helps.

    8. Carla MacKinnon says:

      I was diagnosed when I was 9 and had symptoms from about 5 years old. I have been dealing with RA for 42 years. I have the fortunate experience of not knowing anything different. It is just part of who I am. I don’t let it hold me back.

      I remember when I was about 10 being told by a doctor that I would be in a wheelchair by the time I was 12 and that I had to give up cross country skiing and horseback riding. I looked at him and thought, “Nope, I’m not going to let that happen.” The skiing was too hard on my knees and I did give that up, but I have never given up on my horses. They keep me strong, physically, emotionally and spiritually.

      Find that thing that you are passionate about and let it rule you, not some disease. Don’t be defined and confined by something that you body is doing. It can’t defeat your heart and soul. The stronger you are the better you are able to deal with the things that your body throws at you. Look for balance in your life. Don’t be a victim!!

    9. Betty says:

      With RA, you get to know your body and listen to it. So when mornings come and my body does not work. I work with it, and allow myself to rest and take it slow. I feel we are all to hard on your-self’s. We don’t give into our illness we learn to live with it in a positive way. My great joy is my precious granddaughter.

      I have learned through many years of depression that all we can do is learn to do what ever it takes to stay positive. I read a lot and some spiritual books help me. I meditate and yoga and Pilates help so much.

    10. diana doran says:

      To keep myself grounded I raise bantam chickens and veggie garden. Having critters that I’m responsible for 365 days a year MAKES me get up, dressed and go out to care for them. They’re by little girlies and they depend on me to live. How can I let them down!?! So out I go, RA or no RA to feed, water and clean their “house”. They’re so sweet that they give me joy.
      I also garden a LARGE veggie garden. Yes, I’ll admit it can be VERY hard. Some days I feel I can’t go on, but I do, with my dear hubby’s help.
      I guess I’m stuborn, but I’ll keep going as long as I can and keep praying for the strength to do so.
      What else can we do?

    11. Hi Kelly and All,
      We all fight daily to put RA on the back burner in our busy life’s. Yesterday I made a personal best in benchrest shooting, I took a first place, and two second places at the NBRSA 600 yard match in Ojai California. It took me a long time to get well enough to shoot competitively especially with so many world record holders on the line with me. We must focus on the goal of defeating this disease, get the word out. Let people hear the facts about RD from the ones who know it. But in the process we should also keep looking for the things the great robber hasn’t taken, hope love and the will to push the limits imposed on us.

      Wish me luck at the National Championsphips in Sacromento April 5-20.
      -Roger

    12. […] warrior posted a blog today entitled “How Do You Keep the Disease from Taking […]

    13. joy says:

      Thanks for making me think about this..especially on an particularly yuck day :)
      I blogged it.
      http://chronicdoll.com/?p=158

    14. alyce says:

      I have found that doing Tai Chi or some yoga moves seems to help me most of the time. I attend a Tai Chi class twice a week. There are times when I hurt too much to go and I take a break but come back to doing some exercises.
      I also do prayer and meditation, I am doing Deepak Chopra 21 day meditation challenge right now,
      I feel for everyone who has this illness. We just have to keep on keeping on.

      • Rena says:

        How do you like Deepok Chopra 21 day meditaion? I have wanted to try that.

        • alyce says:

          I really like the meditation challenge. It is peaceful and quieting. I am behind a day but it doesn’t matter I can catch up. Best of all it is free. Of course I may buy it when it is over.

    15. Rena says:

      It always makes me feel better if I can get outside and smell the fresh air, see the blue sky or look at the moon and stars at night. I live to look at and listen to the birds. Watch the rest of the world going on about their day. A few days ago, I saw a robin eating a nice fat worm in my back yard. I was smiling ear to ear before I even knew it. That single event made my day. I love to see the robins come back. It is such a nice sign that spring is finally coming. I am looking forward to digging in my flower beds and garden. There is no occupation like gardening where you can sneak up behind someone doing their work and find them smiling! I am aslo looking forward to soaking up some sun. I love to soak up the suns warm rays and naturally make some vitamin-D. It warms my body and my soul!
      Remember…Even in the deepest darkest valley, one can still look up and see the stars. :)

    16. mj says:

      As Rena and Diana said, its the gardens and the animals! I too keep chickens (for fun) and grow veggies and flowers as my primary source of income to pay my bills. Its ridiculous hard work, even when I didnt have RA, but I cannot imagine otherwise. I just keep plugging on with it. First summer season with RA was tough, at the end I couldnt believe I had to deal with this disease and work like this on top of it. Then my next thought was ” I made it through even in extreme pain ” Whooppp! I was rather proud of that, despite the fact there was a day when both knees swelled so much I fell into my tomatoes and was frightend that I was going to impale my self on the metal stakes. No joke. The Dr. drained my knees the next day and started a round of pred.
      I’ve changed my diet around and started Enbrel, and hoping for a better season this year. It really is nature and the outdoors that keeps me going. And that I’m optimistic that better treatments are around the (next few) corners.

    17. Marlene says:

      I just recently got diagnosis with RA. however have been suffering for about a year. I’ve started my medication regiment that my doctor prescribed. It will take a couple months before results happen. In the meantime….I take things one day at a time. I have a special needs daughter that keeps me going. My days start early because they need to. I am very stiff and need the time for my joints to become somewhat normal. Since seeing my specialist I have a more positive outlook. Eating better and trying to be active when my body allows. I have 2 dogs that need walking that is a motivator for me as well. Since my RA I find that the distance I walk my dogs have been shorter but I am still being active. My moto is….. The more activity that your body lets you do is better. I find that the pain goes away just for that little bit!!

    18. Lisa says:

      I drive away, far far away. I’m a trucker with RA and putting this eighteen wheeler on the road, grabbing gears, and listening to that big diesel engine roar soothes my soul. Some of the time I can leave this disease in the dust behind me.

      I hope one day I can leave it behind forever.

      • Beth says:

        I like that coping strategy Lisa, good for you!! I find driving soothing too, but with only a measly 4 wheels, I rely on music to add the ambience – usually something like Led Zep cranked right up :-)

    19. Cynthia says:

      hi Kelly,
      Yes, it hurts. It hurts even when we smile and talk and laugh. It hurts always.
      Here’s my blog post today I wrote about people’s misconstruing our signs and thinking all is well when really it isn’t.
      http://cynthialottvogel.blogspot.com/2013/03/my-norrmal.html

    20. Ruth says:

      Hi I have just been diagnosed in the past 5 months but MD said I have probably had it for at least 15 years. My problem is the med he has put me on pred and methotrexate they have made me sicker that an of the effects of ra. Pain and stiffness has become part of my life I can deal with but feeling like crap because of meds I can’t. Does any one have any suggestions? The only reason I even took the meds was because I did show joint erosion in my hands,

      • Mikaela says:

        Hi, Ruth. Are you taking methotrexate orally? When I was on the pills I was a puke-machine. They made me sicker than I knew a person could be, and still live. My rheumy has switched me to the injection and it’s a world of difference, as far as side-effects go. Still not better RD-symptoms-wise, but it takes time. If you’re taking methotrexate orally, I’d recommend discussing injecting with your doc. Many, many people see a huge difference!

        • Beth says:

          Thanks Mikaela, that’s really useful and encouraging info. I’ve only just started taking methotrexate, 5mg the first week, 10mg last week, and in a couple of days I start what will be my regular dose of 20mg. Gradually reducing the prednisole at the same time. No actual throwing up but constant nausea, and – um, how can I put this delicately? Let’s just say that when I eat, it’s in one end and out the other. SO not looking forward to the increased dose, but armed with your info, if I still feel horrible in a couple of weeks I’ll ask about the injections. Cheers.

          • Kris says:

            Hello all,

            When I first posted in January I was told I have Palindromic Rheumatism. The symptoms quickly took over and now I am told it has truned the corner to RA and I am on 10 mg of Methotrexate a week and 5mg Prednisone daily.I took began at a low dose and when I got to 7.5 mg I felt great like nothing was wrong-no pain no exhaustion then I went up to 10 mg of MTX and was fine for two weeks except tummy rumbling and loss of appetite. Easter at Mass the pain began again with exhaustion and my hair is shedding and like Mikaela wrote everything I eat comes in and out rapidly. I’ve been in and out of bed since Sunday thank God I am on Easter vacation until Monday. How quickly I forgot how painful this can be. My fingers and wrists are the worst but it’s all over. I did call my MD today and waiting for a call back. I’m flaring and miserable trying not to let it get me but it’s exhausting especially when I don’t want to eat yuck- I have been drinking Boost and eating protein bars. Will the big ‘D’ and tummy issues ever go away? Am I going to need a wig?

            • Kris says:

              Sorry, I meant what Beth said. Does Mextho mess with your brain too? I am noticing typos and having a foggy mind. This is still so new to me I am just trying to get a grasp on it.
              Thanks.

            • Diane says:

              Hi Kris

              Do you take prescription folic acid with your methotrexate? Methotrexate is a folic acid inhibitor, and as such you need to replace it in your body. Since folic acid aids in cell division so it will help stop the hairloss.

              I found that the other symptoms of methotrexate gradually went away as my body got used to it after about 8 months. Everyone is different and will experience different symptoms.

              The brainfog still gets to me now and again, but I’d rather be foggy than in pain :). If it is too much to handle, you should mention it to your doctor and he might change your meds to something you can cope with.

              Good luck and I’m sending lots of prayers your way!!

    21. Cindy Malinowski says:

      Well, the one thing that seems to keep me afloat is, others afflictions. When I find myself sinking in disrepair about my limitations and my constant pain….I come across a face book comment from someone telling me how I inspire them, or how brave I am, or how my humor lifted them….I think, if they only knew….but when they say how they are facing a health issue or a family crisis…it makes me look at my life and see how really blessed I am. Yes, I hurt, don’t sleep well, can’t do what I used to, and visit countless doctors and emergency rooms, BUT I do have accomplishments that inspire others, I do have a happy life considering….and that is what lifts me up when all feels out of whack. I always say, through my path in life, when things get too much to bare, My Lord has carried me through. sometimes, wiping my tears and other times sharing in a belly laugh…I try to keep the half full attitude going, and I allow my self to weep now and then….but laugh louder when I can

    22. Nancy, RN says:

      As a nurse, I utilize what I have learned about coping with chronic disease to empathize with as well as encourage patients. I try to eat better, exercise more, and get the rest I need in order to keep balance in my life. Spiritual health is also important. I am a Christian, so reading the Bible and participating in worship are huge for me. Finding balance and keeping a positive attitude are not easy, but they are worth the effort.

    23. Art Puchowicz says:

      This is a crazy story but bear with me folks. About 6 years ago I gave up on my family doctor and had to find an answer why all my joints were clicking and hurt. I got real lucky and found a Fantastic RA Doctor! Over the past 5 years with Biological drugs She has prevented my joints from twisting and deforming. But every drug we tried my body after a year says nope not working any more. I am currently taking 600mg infusion of Remicade monthly. Back in October 2012 my left shoulder and arm were in extreme pain. I contacted my Ortho doctors as I have had many rotator repairs. So he scheduled me for a arthroscopic surgery before xmas. Yes he confirmed the joint was over taken by RA but was not causing this pain!
      In October my RA doctor did a spinal X ray and said I had RA in C-6 and C-7. I asked my ortho to recommend a nero Surgeon. She did all the tests MRI,Emg,X Rays. It turns out I have a pinched nerve in my neck that controls my left arm. She gave me the option of surgery or pain management. So I went to pain management! We are doing steroids in the spine. When me and the pain management doc started to talk, I have seen him before we talked about general pain. This is where it gets weird. I pulled out a 45 automatic, not loaded and held it to my head. I told him if he cannot control the pain this is the outcome. So he started me on a nerve blocker and morphine. I have started the nerve blockers and its woking great! Morphine is on HOLD! I fell like a new man, I know I am not cured but at this point I am living with no pain!

      • Beth says:

        Your pain specialist must have got a hell of a shock when you did that, Art! Glad you’re feeling somewhat better. I’m newly diagnosed with RA, and funnily enough that’s helping me with the initial adjustment. I’m unfortunately involved with the legal and insurance systems, as I had a rather nasty car accident 15 months ago. The insurance system in Australia (and probably everywhere) is extremely adverserial – the insurance company (sometimes) pays your medical bills and a monetary settlement when you’re deemed to be recovered or stable, so even medical specialists your own GP send you to seem to view you with suspicion, let alone the insurance company’s doctors you are required to see. My own neurosurgeon, who performed a spinal fusion for a herniated cervial disc with radiculopathy, continually tries to ‘catch me out’ -eg Him -‘which arm hurts the most’? Me – ‘the left one’. Him – ‘last month you said it was the right one’! Like, VOILA!, you lying malingerer! Oh dear, where was I? Oh yes, symptoms such as carpal tunnel and toe numbness resulted in me seeing ever increasing numbers of specialists, the vast majority of whom were entirely focused on whether the symptom could have been caused by the accident. Invariably, the answer was it couldn’t have been – dismissed, next! I can’t count the number of times I’ve left a specialist’s office almost in tears (I wait until I’m alone to blub) – with my left arm still hurting and none the wiser as to the reason. Anyway – the diagnosis of RA was a relief, as well as a lot of less favourable reactions. I’m not crazy, I’m not a malingerer, I’m honest and upfront and I have RA. So there! The thing that helps me the most at the moment is hydrotherapy. Hey, today I reached my pre-accident personal best of 100 push ups! Who cares that I did them in the pool, instead of on land :-) Sending such genuine good thoughts and care to all RA Warriors xx

    24. Julie says:

      This is a great idea and a perfect blog topic to get everyone involved and help each other. I will do a blog about it on my site when my little one goes to bed tonight. Thanks for the idea (i was having major writers block as far as topics for my blog) and for including other bloggers in this topic. :) I’ll let ya know when I’ve posted mine. And p.s. I was able to read a few comments on here (my 3 year old only allows me to have about 2 minutes a day to do anything :-P) and you all, from what I’ve had a chance to read, sound very strong and inspirational and have great ways of telling RA to take a hike! Keep fighting! Please check out my blog if you’d like. Ours for JRA, RA, OA, or any chronic illness. Juliesjrajoint.com. I also started a donation page of my own for the arthritis foundation. Thanks in advance and again, Kelly, thanks for including us in this important topic! Instead of dwelling on the crappy hand we were dealt, let’s all look at the little things that make us smile. Because people who don’t have chronic pain don’t appreciate those little things that we do. We won’t let this ruin our lives if we can help it!

    25. […] much, because frankly RA has been kicking my butt lately.  So RA Warrior’s blog carnival about How do you keep the disease from taking over is very […]

    26. Teresa says:

      I am newly diagnosed. I started methotrexate, plaquenil, and mobic almost two weeks ago. I feel worse than I did before the meds. I am in so much pain sometimes i can barely walk. Is it normal for my skin to hurt so badly I can’t stand to be touched. I also started a steriod pack yesterday. My palms are very red and the back of my hands and forearms are ery splotchy. I don’t know what is normal and what to be concerned with. I thought the meds would take away the pain, not make it worse. my pain pills are not controlling the pain. I just wish I knew what to expect.

      • Teresa, This is such a difficult time & there is so much to sort out. Good for you to be asking questions and being active looking for answers.
        Many people have said they hurt that way. None of the meds you named are pain meds – are you taking something else? The redness might be from the steroids, but you should give your doc a call if it continues in case it’s something else.
        As a rule of thumb, I don’t think we should ignore something if it scares us. Having a disease like RA with SO many different symptoms and meds tends to make us ignore too much.
        It often takes about 6 weeks for the mtx to help noticeably. The mobic is an NSAID similar to Advil/ibuprofen. We do not all respond to the same ones so you need to let him know whether it’s working for you. So while the meds are probably not making it worse, they may not be helping yet. You may also be having side effects from the mtx &/or plaq – unfortunately if you started both at once, it’s hard to know which. Here’s one article about avoiding side effects http://rawarrior.com/methotrexate-and-rheumatoid-arthritis/part-6-checklist-manage-methotrexate-side-effects-rheumatoid-arthritis/ that might help.
        It won’t always be this tough Teresa. I can almost promise that – there will be easier days.

    27. Jim Keating says:

      I find that living hour by hour or only concentrate on the moment is very helpful . I also like to force a smile all the time. It is surprising how happy a smile can make you; it has a very therapeutic effect that actually makes you happy. Never feel sorry for yourself. When the pain is minor bath in the pleasure of no pain. When the pain is excessive think how good you will feel when it is gone. Luckily, for me I have ,most of my life, done aerobic exercise, I continue to do a spinning class 6 days a week and it is invigorating. Being in shape and able to work out is my salvation

      • For many of us, there are not times when the pain is ever gone, but I agree we can almost always smile anyway, as I’ve said/written so many times, and I agree it often helps. I also agree that we should take one moment, one itis, and one prescription at a time so we do not give the disease more power over us.
        When I could run, lift weights, and garden, I felt the same way as you, Jim. I miss being extremely active and it seemed a big part of my identity, but it is gone for now & I still have to find ways to be “me.”

        • Teresa says:

          Thank u Kelly. I am taking lortab 7.5, 1 every 8 hours. But it doesn’t help. And if u tell the doc that, they make u feel as though u don’t need anything stronger or ur just wanting pain meds. So I don’t wanna ask for anything stronger.

    28. KarlaGR says:

      Every morning my wonderful boyfriend will text me and ask how I am feeling. My son asks my every night, when I come home from work exhausted and barely functional, what he can do to help me. What keeps me going are the caring, thoughtful, loving people I have in my life. There is always someone worse off than me, I do have a lot to be thankful for. It took four months of pain to get diagnosed, another month to get into the doctor, and now three months later the meds are not working. But I have a friend in remission, so I just keep the faith….

    29. Amy says:

      Oh, what a comfort to read when feeling lousy. This disease can make you feel crazy and knowing others deal with it in healthy ways helps. Since getting RA my life has completely changed. I was a very productive artist who sold work and taught regularly. This was in addition to teaching art to kids in public school every day. I was going to college nights, out with friends, walking my beloved dog, traveling, caring for my parents, etc. Then BAM. RA hit and it all slowly disappeared. I find myself ten years later — husband gone, family distant, extra teaching (and income) gone, traveling gone, art almost gone , though I try really hard not to have this happen. What I have added to my life to bring me joy is a family of animals that don’t mind if I don’t feel well, but still need their breakfast. I got interested in parrots and the cleaning involved is excellent physical therapy and exercise! I laugh, smile, sing, dance, and talk with them every day, and they, along with my cats and dogs, are my joy and show me how to enjoy every day. They are in cages, and in a way I am too with the constant pain, but it doesn’t mean I can’t be happy while there!

    30. Fran says:

      I have played clarinet since the 4th grade. It is my love, release and joy. Imagine my sorrow when I learned I had RA. Not only do I mourn RA, but I mourn the possibility of never playing again. In September 2012, a civic orchestra asked me to play with them as their principle clarinet. I discussed my RA with my teacher. He gave the most beautiful and best advise … do not let the pain into your music. It is simply not allowed. It has taken some practice and time to make this happen, but I try. Playing continues to be my joy. The real joy for me happens when others become very excited about my playing and tell me so. That will beat pain every time.

    31. Erin says:

      Hi Kris,
      I agree with Diane that you should be on folic acid with your MTX. My worst side effect was mouth sores; my rheumy tripled my folic acid dosage and those stopped almost immediately.
      My hair loss also stopped after a few months, but I’m not sure it was as bad as you’re describing. I have a lot of hair to start with, so it actually made my hair look better at first. We did have to use clog remover like five times in our bathtub after I first started on it, though.
      As far as the stomach issues– well, that is a sore subject for me. My worst problem is room-clearing gas. I’ve had to give up certain foods b/c I just can’t eat them without horrible gas and discomfort. But even then, it’s really embarrassing. I’ve had to have conversations with my kids about how mommy’s gas is private. That was fun. I just didn’t think I needed them telling everyone that every time I exercise I stink up the room. LOL. I’m still looking for a solution to this, not sure I’ll ever find one. Stomach issues run in my family. I will take the gas over the pain, and the MTX has made a HUGE difference for me as far as how well I feel.
      Hang in there! You’re not alone! I hope your side effects fade very quickly! :)

      • Kris says:

        Thank you Erin and Diane,

        I checked my multi vit that I take and it has 400 mcgs per serving and I am assuming that is not enough. I did purchase a separate bottle of Folic Acid at 400mcgs a serving and will add it on. My docs office ‘forgot’ to tell me about taking FA but did send me a brochure to order through mail. I realize FA is important but can’t it also take away the benefits of the MTX? Is 1200 mcgs enough? I take 10 mgs of MTX per week and since I am in a flare he increased my Prednisone to 15 mgs per day for one week.

        Thanks,
        Kris

    32. meliann says:

      What I’m learning: Be flexible and adapt to the current reality. I loved jogging, hiking, trail-running, none of which are currently possible – but on my better days I can still walk. This can be wonderfully enjoyable, especially if I am over the frustration about what I can’t do, and focus instead on what I can do.

      I try to remember what brings me joy, and appreciate what hasn’t been affected, like my love of music, or hanging out at home with my husband, or sitting with my purring cats on my lap.

      I also think it is very important to not get isolated. For those of you with families and who are working, you might like a few minutes to yourself :) but for me, after being out on disability for a year, and having unpredictable but usually present pain, it is easy to just stay at home and not do much. I am trying to find ways to stay involved, and if possible to help someone else. I looked for a volunteer activity that involves short stretches of time, does not require any significant physical activity, and one where if I can’t make it, it is not the end of the world. The best I’ve found right now is working one-to-one tutoring a student in reading…it is both fun and satisfying, I think for both me and my student.
      I also discovered Meet-up groups, which are a great way to find others who share your interests, whether your interest is a book club or meditation group or social outing.

    33. Olga says:

      I have had RA for 24 years. It began when I was pregnant with my 2nd child. It was so bad I couldn’t lift my head off the pillow, hold my baby or walk without tremendous pain. Was told id be wheelchair bound. Thank God I finally found a dr, a DO who said it was food allergies. I went on a 7 day diet of only veggies and water. By 3rd day I kid you not, I was pain free!!!!! On day 8 I began introducing foods 1 by 1 and noting how it affected me (pain) after eating or drinking it. Blood tests also confirmed my food allergies. Dairy is the worst for me, sugar, beef, yeast, wheat, soy, albicans in air. I still eat what i want but in moderation. Begin taking Plaquenil, a life saver!!! I generally stay away from dairy which causes the most RA pain for me. I swear the best RA drug to this day is Plaquenil, I take 2 200 mg a day. Took for 20 yrs. Sometimes I took only 1 a day. If I have a bad day I take etodolac 500. Mg 1 time per day as needed too, great med . I was dx with high blood pressure 3 yrs ago and med dr gave me took my RA out of remission, water pill took all potassium out of my body. Caused tremendous RA pain again. I tried 7 bp meds until I finally found 1 (micardis) that works and my RA is back in remission, no pain again. I too tried methotrexate but had hair loss, fatigue etc and I refused to try biologics. I knew it was the bp med casing my pain and i was right. We know our own bodies better than drs do so listen to your body and don’t be afraid to tell drs no if you don’t want to try a med they recommend. Also, you must have a rheumatologist treat you, not an MD. I’m still just on PLAQUENIL, generic name is hydroqloriquine, just $4 at Walmart or anywhere. After 24 years this is the 1 med that works the best for me,and I lead a normal life able to do anything i like. God bless you all, will pray you all find the right treatment for you.

    34. Marti says:

      Kelly: for whatever reason when I clicked on your email link, it wouldn’t let me. I wrote something on my blog for the carnival. Mamamarti67@blogspot.com RA: One Woman’s Battle. Thank you for all you do!

      ~Marti

    35. Patricia Anita Young says:

      Thank you all for your ideas> It is most comforting to know that I am not alone with the stomach issues. I got to the point where I isolated because of my tummy issues when I wasn’t isolating from the pain.
      I do want to repeat from my own experience with decades of revengefu, relentless pain: Repeat after me: There is life and hope and freedom from pain in your future.Please
      don’t give up or give in to your pain. Fight back by telling your Physician how you feel until they find your solution. Time is crucil in treating Rheumatoid disease.

    36. Nancy Mac says:

      I could not take oral methotrexate. It made me sick…I didn’t eat for days, had horrible stomach pain and everything tasted like metal. I had blisters in my mouth, my ears and in unmentionable parts of my body after only a few doses. I did some research (and read Kelly as if she is my Bible – which she is) and went back to my doc and asked to inject the methotrexate myself. He agreed and also put me on Corvite FE ( a prescription vitamin with Folic Acid). WOW, what a difference it has made. Like a new person.
      I do not take the Corvite the day I take the methotraxate.
      I have also found that keeping a journal – I use an actual planner – to keep track of exactly when I inject what (like Enbrel, methotrexate, etc), get blood results, change meds. I can now predict (within hours) when I am going to “want to pass out from exhaustion” – after methotrexate.
      None of us have it easy. I read something on RAwarrior everyday. It always helps.
      Thank you, Kelly, for putting Kris’s question up here. Good luck Kris. Keep writing in and asking for help….this is how I have gotten my best answers…..from all of you! Thank you.

    37. […] Warrior is doing another blog carnival and has asked patients to blog or comment on what do you do to keep the disease in taking over […]

    38. […] a month ago, Kelly asked the question on her blog, “How do you keep the disease from taking over?” It’s a great question and one that I thought of quite a bit when I first read her […]

    39. Marlene says:

      Hello everyone!

      I wanted to ask some of you about RA and diet? Now I have been diagnosed only a few months ago but have been suffering for about a couple years. Now my question is does going gluten free help people with RA?. I’m very confused because my family is telling me to try it and see if there is a difference!,, I started my medication regiment only 3 weeks ago and still I have pain almost everyday not fun!! If anyone out there has tried this type do diet I need to hear from you please……still suffering almost daily thank you!!!

      • Marlene, it often takes at least 6 weeks for the medications to begin helping and sometimes as long as 3 months. At that point, they are supposed to make adjustments if needed. So first of all, don’t give up that these meds could still help.
        As far as diet, there has not been a placebo controlled study proving any benefit to the damaging effects of the disease and most patients do not report diet changes improve RA. However, there are some who say they do feel some foods make them feel worse, so if you suspect that, it’s worth eliminating foods and being careful to keep a strict record of what you eat. Two things make it difficult to determine – 1) the medications may “kick in” and 2) most people have a flaring disease pattern that is worse at times than others. There is an RA and diet Tag in the List of topics with more articles on the topic.

    40. Erica says:

      I’m very scared. I’m 25 and was just diagnosed yesterday (RA of the cervical spine). For the past 4 years, I’ve been experiencing sever pain, stiffness, and muscle spasms that put a great deal of pressure on my neck, shoulder,back, and head. It would always flare up in spring, and eventually go away. I always attributed it to stress because I was working in a very stressful environment, and doctors always told me that was what it probably was. Now, however, I am self-employed and have very little stress in my life. So when the flare up happened this year (and lasted longer/was more intense than ever before) I was concerned. I was fortunate enough that my new doctor truly believed my concerns and ordered blood work and an x-ray. I was positive for ANAs and showed a reversal of the lordosis of my cervical spine, so he sent me to a rheumatologist right away.

      Now I’m just so scared that my life is going to be consumed by pain. I’m a very active person and I’m so young that the prospect of a future like this is crushing. I’m so glad that I found this blog and will definitely frequent it for support. Does anyone have any advice or encouraging words to help me deal with this??

    41. […] This is for a “blog carnival” about “<a href=”http://rawarrior.com/how-do-you-keep-the-disease-from-taking-over/”>How Do You Prevent the Disease from Taking Over</a>?” from a prompt by Kelly Young, whose […]

    42. Sharon P. says:

      I am a female, will be 40 years old in 3 days, married for 17 years and have two sons- 12 and 9. I’ve never been overweight and have always been in generally great health. I have an extensive family history of RA. My G-ma was completely bed ridden for 19 years with RA- most of her joints frozen- and I have several cousins with RA. I was diagnosed 2 yrs ago. Was in lots of pain and could barely walk by the time I got home from work. I have bone damage in my feet and lower spine/hips, but have stiffness and pain everywhere. My doc said my best bet to not become disabled is to find a med that works enough to let me get active, and get a personal trainer familiar with the disease. Went through a few medications over a year and a half and none worked. I was very depressed! I’m on Humira now. 5-6 months after starting Humira, I woke up one day and felt a lot better! Not normal, but better. So I decided right then that this was my chance to take over and not let the RA win! I quit smoking after 15 yrs (I know…wish I had NEVER started) but anyway, cold turkey quit that day, and started eating much cleaner. I also joined a gym and found an excellent personal trainer. I meet with my trainer 3-4 days a week and do my own thing the other days. I have become so much stronger and feeling so much better. Still have plenty of RA issues, but an amazing improvement! I’m actually training to do the ‘Warrior Dash” in a few months. It’s a 3.3 mile mud run course with 12 obstacles. I know I won’t finish with a fast time, I don’t care! I just want to finish- period. I’m really excited to earn a medal…and will get as many more as I can! Hopefully I beat the odds of becoming disabled within the first 10 years of diagnosis, but if not, I will as least have my medals of my physical accomplishments made after diagnosis! I’m very excited and hopeful and determined! That’s what keeps me moving in the right direction. Much love and encouragement to all! <3

    43. Lawanna says:

      WOW just what I was looking for. Came here by searching for How Do You Keep the Disease from Taking Over?

    44. Jacqueline Penniman says:

      Hi, yesterday I received your blog for the first time. I am so happy for it. I was diagnosed in 2009 and most information that I have received through the internet has been very impersonal. I feel like I am hearing from someone who knows what is happening. Please continue what you are doing. I do not use the traditional medications except for ibuprofen or prednisone. I have used herbs, diet and mostly prayer. I thank you for your comments and humanity.

    45. Rick A. Calbi says:

      Do you want to know how to live with the disease or get rid of it to a great degree? It is possible! I have reduced my RA pain and other symptoms by 90% doing Earthing [grounding]. It WORKED miracles for me and my wife who has Fibromayalga. In 2011 my rheumatoligist said I had a severe case of the disease and he immediately put me on prednisone and metho.shots until in 2013. With only minor relief and my desire to not take damaging medication, I began my own search until I literally stumbled upon a book- “Earthing:The most important health discovery ever?”, by Clinton Ober. It has given me back my life! At my last Dr.visit,after 3 months of earthing, I walked into his office and he stood up from his chair and said,”I guess you have no pain.” I asked,” how can you tell by my just walking in?” He replied,”Your color has returned, what have you been doing?” I told him about my Earthing which he said he had heard of previously.He checked me out,read my recent lab work and said,”You have very minor traces of RA.” I told him “the only time I feel sore is when I overdo yard work or if I forget to do my earthing”. He said,”well don’t overdo it and keep earthing and I will see you in a year,unless you need me”. I originally thought Earthing was a scam,like buying snake oil. My wife and I were amazed with the results from this inexpensive and natural process. A furthur TRUTH is that my friend in Maine who has MS no longer walks with a walker! Earthing is truly a gift from above. Good Health to all.

    46. Robyn Ridge says:

      Thank you for your being able to return. I looked everywhere and could not find you even on FB. I felt there were problems, but wasn’t sure you would be able to answer. This past year has been one of many changes and if the RD was causing problems in my case, I felt I could only imagine things you were going through. How we can become so reliable on another amazes me, but the comfort it brings with RD struggles knowing others have a fight for their lives too and their struggles bring untold relief when family doesn’t totally get it. It is like someone out there recognizes what struggles there are and for many there is hope. I eventually found out the meds had caused a severe break and fractures in my vertebrae. At first none of the doctors knew what it was, and I went for different tests, just not the right ones. The internal gastro doc I went to told me I didn’t need his help, but none of the doctors were listening to me, and e prescribed a 2mg tab of Valium for muscle soreness. I went back to my RA doc and told her. She suggested a bone specialist who found the, as he said it,” a broken back. He had me get off the prednisone, only to see me 2 months later and said I needed it. Meanwhile my PC doc suggested I go on Forteo to rebuild my bones. During the beginning my bone doc would not let me drive for 4 months and he ordered me not to do any cooking and to just stay in a recliner. I lost over 30 lbs. One day he looked at me and said don’t you know mtx can cause bone loss too. My body did seem to improve and am now only on prednisone which my RA doc says is a minimal dose and it shouldn’t hurt . I found out during this time there many medicines I can’t take and Humira didn’t help. Methotrexate stopped helping anyway. With my side-effects of many meds and allergies My RA doc isn’t sure what I can use. For now I do what I can do and a no longer in the recliner, and can actually use a push cart when grocery shopping, but only shop with my hubby, unless I need a loaf of bread. (:)) and do some driving again. I do rest when needed, and live on hope and faith, despite the many pains I have. Much love Kelly for you being able to come back and I know how I hurt after typing. My fingers are no longer straight, but I will not give up and am happy once again to be able to read what you and others have to say which gives me inspiration.

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