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Tackling Rheumatoid Arthritis

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  • Tackling Rheumatoid Arthritis

    Wondering if anyone can share having rheumatoid arthritis diagnosed years ago and handling the fatigue, farmwork, home, & horses. Ive been diagnosed over 20 years now and finally the Humira and chemo work, but zap me. I find it hard to jump a course of 8-10 fences because it leaves my legs shaky & form messy. Just working on 2-3 fences seems best...cant wait for Fall and cooler temps!
    Last edited by fxhtr; Jul. 17, 2011, 10:40 AM. Reason: grammar,punctuation

  • #2
    I got hit hard with RA symptoms in April '97 and got diagnosed in January '98. The most important thing I've learned in all these years of severe RA is that I can do a lot of things, but I usually have to modify them to suit my abilities. I also have to accept that some days I just can't do some things that I can do on other days.

    I took up driving because I couldn't seem to stay in the saddle, and it has kept horses in my life. I wish I could ride, but this works, and it's way better than giving up horses.

    I also still bike, but not nearly the number of miles that I used to do regularly. At one time I was riding 50 miles each weekend day. Now I'm happy with eight.

    I believe that those of us with RA need to do what we can to keep the things we love in our lives, but accept the compromises (yeah, that's the hard part).

    A year or so after my diagnosis, my husband decided to stay home with our then six year old daughter (she's 18 now) so that I could just focus on work. Not having any responsibilities for home or animal care has enabled me to stay in my career (system support, with long hours and high stress at times). I think if I'd try to keep up with everything, I would be on disability by now.

    BTW, I found that Humira has been the best med for dealing with the fatigue. Unfortunately that doesn't mean the fatigue goes away--wish it did. I'm also on methotrexate and meloxicam.

    Don't know if any of this is helpful--all I can say is that I know how hard it is.

    Rebecca

    Comment

    • Original Poster

      #3
      What I really hate too r some co-riders think Im timid or too cautious, but they dont understand how we FEEL. Just because we look bright and bubbly, thats not how our bodies ache, hurt and leave us exhausted. Im not going to jump or gallop unless im 100% in the saddle. Somedays, Im just lucky to get in the tack. People dont understand how much it takes to prepare the horse, tack up/trailer and get aboard.

      Comment


      • #4
        I'm dealing with a new DX, and not set yet on meds that keep it at bay.

        Riding? I wish! It's all I can do right now to get them fed. My deal with DH is I take care of the farm/critters - I've been through a lot with back surgeries, but this has me seriously wondering if I can do it

        I know it's hard to explain to friends & family - my rheumy told me the best way to explain what we're going through is to ask them if they've ever had the flu - do they remember the overwhelming exhaustion that comes with it? That's our normal...add a whole lot of pain - serious pain - that doesn't ever seem to go away. Maybe that will help them understand.

        Best of luck to you, keep doing as much as you can - there are some of us out there that would give everything to be where you are

        Comment


        • #5
          Wow, I wish I were out jumping courses! =)

          With the addition of cytoxan, I am happy with a ride or 2 a week, all flatwork.

          Friends mean well when they say "you look good tho!"...and aren't we happy that we do? =)

          But I describe it to them as trying to swim thru molten lead..everything feels like it weighs triple it's real weight, and there is just no such thing as "stamina" anymore. Fogginess, nausea, burning muscles and joints...I manage my daily chores thru it all, but often lack the focus and just plain ol' ABILITY to ride, some days.

          Having dealt with polymyositis as well, there are just days that riding simply is not going to happen. I have done some driving, and my horse is a wonderful driving horse if I need to go that route in the future; and I have a Cob baby that after I train u/s will also learn to drive...just in case!

          I tell hub that I honestly thank my horses for giving me the absolute NEED to get up and out in the morning. It would be far easier to sit and let those horrid first few hours pass..or would it? After going out to feed and brush and get the horses' day started I just feel better. It's a super adjunctive therapy with no side effects except maybe an empty pocket or two...lol

          Here's to us...may we forever have the abilty to do what we love!

          Comment

          • Original Poster

            #6
            XFactor-I love ur swimming thru molten lead analogy; that really makes sense along with a seething hot pain in many places. What does the cytoxan supposed to do?

            2BayPonies - my outofstate girlfriend newly diagnosed with RA, cant ride at all anymore, and her husband has stopped helping with all barn chores and she has 6-8 horses (and he wont let her sell any of them!) Hers has really manifested in the shoulders/arms, so imagine all the lifting and pulling and mucking she cries thru. Some husbands Ive been told think ur faking it; others are very supportive.

            RM Jacobs - Im starting Meloxicam again. It was originally given to me from a sports medicine dr I went to for soreness in the quad and inflammed feet, but I only took it for 8 weeks; last few weeks Ive been flaring soo much, yesterday I started on it again. They say it takes about a week to build up in the system, but I swear this am, I can already feel a difference the minute I got out of bed & put my feet on the ground. I hate to add more drugs to my system but the vicodan wasnt cutting the daily pain while I am on the Humira and methotrexate. I havent ridden in over 4 weeks bc of fulltime care & daily farm&home chores; my young mare colic'ed needed emergency surgery at UGA and now re-coliced and its making me walk on eggshells not wanting to leave the house for grocery shopping;keeping an eye on her at all times with these extreme temperatures while normal care for my other horse. STRESS and nonsleeping has greatly induced my flares.

            Girls - please all stay in touch privately thru my email/listed thru chronicle profile; U r a great source of inspiration and fellow shoulders to cry on when we need it. Oh yeah, I have to have blood panels done every 3 months now; what about u? I used to have to go every 6 weeks. Guess Ive been on so many drugs since I was 29, they r worried about live/kidney degeneration but Ive said all along, its quality of life; better living thru chemistry. Its better we enjoy life then be depressed and in bed or the house all day, day after day....and then gaining more weight too! No couch potato for me.

            Comment


            • #7
              Fxhtr, the cytoxan is for the polymyositis; I am just one of those lucky ladies that has multiple system involvement. Can't continue on pred as my last bone scan was depressing. Been on methotrexate, Imuran, on and off prednisone, Plaquenil..IVIG infusions, joint injections, and meloxicam is like candy for me.

              Never have nor would I go the vicaden/perc route, as nausea is a big issiue for me and they make it even worse. I'll keep pain over nausea!

              BUT...unless I am having a brutally dreadful day, I am up at 5, out cleaning paddock and doing chores before 7 and will do so until they pry the pitchfork from my cold dead fingers...lolol

              Hub was never a fan of the horses; rarely does the chores with me. BUT...in seeing what therapy they are, he has actually come to love having them here after all. His fervent belief at first, was that I was "overdoing" things and making myself sick. He now realizes that idleness is my body's enemy, and tho yes it needs rest, I turn into the tin man if I sit or lie still for very long. You KNOW what I'm talking about!

              We do find out who our friends are..I often have a few that show up unexpectedly, pitchfork in hand. I used to be the one showing up for them, and now I have to learn to be gracious and accept the blessing of their help. NOT EASY to do!

              I wanted to be so much further ahead in training this year, but although in terms of maybe shoulder in/ shoulder fore etc I may be lagging a bit, I have learned far more about my horses by stepping back and just chilling out a bit with them.

              I do believe that when I get back into my old routine of riding 4 days a week (fingers crossed) that we will move along quickly thru what we have learned while NOT in the saddle.

              My trainer is an angel and if I really just can't get hitched up and out to her, she will come to me. GOD bless her for that!
              She will also ride for me if I am out of it, or just tailor the lesson to how we are doing that day.

              Life needn't stop...we just need to learn how to forge new paths, is all. Having a passion such as we do, is a gift and I truly believe will keep us going when the going gets tough(ER).

              Onward and upward, ladies. =)

              Comment


              • #8
                Having suffered through Lyme disease without a diagnosis for a long, long time, I came upon the Spoon Theory to explain why I was just too tired.

                Comment


                • #9
                  Perfect! Thanks for sharing. =)

                  Comment

                  • Original Poster

                    #10
                    Ditto Laura; im winding down right now at 7:27pm; time for meloxicam and later - if im lucky - a deep sleep - to help prepare for Monday. Love that website - butyoudontlooksick !

                    Comment


                    • #11
                      I am glad to see this post. I was diagnosed a couple of years ago but am just now needing to see a specialist. Now the problem is getting an appointment. My GP has sent my records but I don't have an appointment yet.

                      I rode a lot the past three days and paid for it today. I do not do well at pacing myself when I feel good and I am going to have to work on that.

                      The worst thing is being still. As long as I am moving it is not to bad but once I stop I lock.

                      Comment


                      • #12
                        I have switched to dressage the different postion really helps, and i have different tack ect for different horses. Im only in the beginning of diagnosis but, if your not allergic to sulfa, i am on sulfacytozine(sic) which is of a antibiotic decendent works well for me in keeping down pain ect.(i didnt have the option of other drugs due to dide effects interfereing with other conditions) other than being a sulfa drug it has few side effects.
                        Beyond the Ring-para dressage, training, coaching
                        www.facebook.com/btrparadressage

                        Proud Team Four Star Minion! Renegade for Life!

                        Comment


                        • #13
                          Lots of good responses here! I think anyone who hasn't lived with RA doesn't really understand it, try as they might. My husband comes close to understanding, but sometimes even he forgets that there are days that just getting up and walking across the room is extremely painful. I still do it, because if I don't, as others have said, it is ultimately worse.

                          My father was a total butt when my mother was diagnosed with lupus--he soon left her to deal with life on her own, and he married a much younger woman. When I developed RA, he insisted that I could be cured if I would just find the right doctor. Sure, right, that's not happening. Having watched what he did to my mother, I had no problem just telling him he was a jerk and ignoring his instructions for a better life. No wonder my mother had zero self confidence. She'd lived with lupus most of her adult life, with him telling her she was just crazy, not physically sick. You would have thought he'd change his tune when she got her diagnosis after 25 years of hell, but he couldn't stand to be wrong.

                          Hang in there, everyone! For those of you who are new to this, remember the first year or so is often the worst while we and our doctors are finding the best med combo. For those of you who have been dealing with it long term like I have, as someone else said, here's to us for perservering!

                          Rebecca

                          Comment


                          • #14
                            I tell hub that I honestly thank my horses for giving me the absolute NEED to get up and out in the morning. It would be far easier to sit and let those horrid first few hours pass..or would it? After going out to feed and brush and get the horses' day started I just feel better. It's a super adjunctive therapy with no side effects except maybe an empty pocket or two...lol

                            Here's to us...may we forever have the abilty to do what we love!


                            So very true! I feel lucky to have my wonderful beasts in my backyard, and as hard as it is getting out there, it always helps

                            Here here!!

                            Thanks for sharing such positive thoughts

                            Comment


                            • #15
                              fxhtr, I feel for your friend - and hope her husband gets his head out of his ass! I can't imagine doing this without moral support.

                              My DH is trying hard to understand, but I know it frustrates him. I've had a had few years of back issues...problems that were able to be "fixed" by surgery - this is not so easy to pin down, and no one can say "post x/ after y weeks of PT" I will be good as new.

                              I am trying to keep a positive attitude - its tough, but I know in my heart I'm tough too - I won't give up without a hell of a fight. Having folks to share the highs & lows with really helps.

                              Comment


                              • #16
                                Hang in there, everyone! For those of you who are new to this, remember the first year or so is often the worst while we and our doctors are finding the best med combo. For those of you who have been dealing with it long term like I have, as someone else said, here's to us for perservering!


                                As always R, you keep my eyes looking forward with hope! I know once I get the meds sorted out I will be in a better place. It will never be easy, but I can "toughen up buttercup"

                                Nic

                                Comment

                                • Original Poster

                                  #17
                                  2Bay - thought of u this am, as I came in from feeding/postop inst to my mare; my ankles, feet,hands & wrists seethed in pain. I toook one look at my mare & thought at least I can communicate where it hurts and what im feeling. she wouldnt eat her mash bc of the succeed in it, so i had to drag a clean bucket out, make her alf soup and pour some of that over the mash/succeed mix watering it more down so she'd eat. I remember the saying God always gives us what we can handle but there r days I tell him i cant take anymore to stop...but later on, he gives me more We must all have that motto :Push thru! especially knowing our babies depend on us!

                                  Rebecca- omg, ur line "No wonder my mom had no self confidence" hit home. I was out of horses for 25+ years, then over the past 7, dabbled riding here/there with the wrong horses. Then got into foxhunting and finally learned something - bc i forgot everything i learned as a teenager/college student, was out of shape & back then, winning was always on made horses! Now ive got 2 fabulous horses & love a good gallop when im 100% but lack confidence jumping most of the time. Took a lesson with Heidi White & she yelling ur a good rider, u can do this, helped immensely. Its so apparrant, that in ur lifetime & who u live with, (ive been divorced & now on marriage#2)drains u of all believing in yourself. i applaud u for seeing that early & giving us all a boost here. We must all KICK ON
                                  Last edited by fxhtr; Jul. 18, 2011, 09:25 AM. Reason: adding from previous post

                                  Comment


                                  • #18
                                    fxhtr - you are so right, at least we can express our issues - our poor critters are not so lucky. Sure hope your mare is back to normal ASAP!

                                    I'm pushing thru - head up & ready to rumble - you keep doing the same

                                    Comment


                                    • #19
                                      2BayPonies--Nic!! I didn't realize that was you. Howdy, GF!

                                      fxhtr--doesn't it suck that the bad stuff is what resonates the most with us?

                                      Wishing for better days for all of us!

                                      Rebecca

                                      Comment

                                      • Original Poster

                                        #20
                                        Hey Girls,

                                        My BFF just showed me a new link/site www.rawarrior.org When u have some time u may want to read their blogs and whatnot.

                                        Rebecca--guess we are kinda like our horses; they seem to remember more of the bad stuff versus all the good/things we do for them. My gelding must have been drowned as a child bc he snorts and splays trying to get him into the wash rack, ever since I got him years ago. When I dump a wheelbarrow of wet hay into his stall, he does the same thing when he hears the "swoosh" of the water, falling onto the hay. You'd think he thought a tsunami was hitting his stall! BTW R, how do u deal with driving; its so much more work than being on their backs, and a heck lot more tack to clean & hitch up. I thought years ago Id end up being in the driving club but after seeing a few accidents, Id rather be on their backs...besides the costs of buying carriages and associated tack...wow.

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