I began arthritis awareness month as a sick person with painful joints, and I leave it as a sick person with painful joints. But I also leave it with something new: a diagnosis of lupus (SLE). And while the two events—arthritis awareness month and my lupus diagnosis—are merely related by happenstance, I can't help but feel like there couldn't have been a better time to grapple with my diagnosis. I've educated myself on the recent strides in treatments for both lupus and RA, and I feel cautiously optimistic about my future. And I suddenly feel like a burden has been lifted. I may not know when my flares will abate or worsen, but I'm ready to be patient with myself, to acknowledge my limits, and to ask for help when I need it. I recognize now, in a new way, that I want to live as much of my life as possible with kindness and joy, with or without a chronic disease. My energy is precious. And the unimportant stuff is simply that-- unimportant.
Rheumatoid is a "powerful" disease. Fueled by inflammation it attacks whatever part of your body its desires , at any given moment. Not just your joints. You can be having your "normal" yucky days and the next thing you know you are in a full blown flare .
I used to think I could kind of monitor my symptons and predict when a flare was coming. Not anymore ! The slighest thing can send me into a full blown flare up. Even after 8 years I'm still learning how unpredictable RA is. And more than ever I'm surprized that sleep and resting my body works better than any meds or pain pills . My body has waged war against me and I am at it's mercy.
I "fired" my first RA Doctor and his Nurse Practitioner--waited, waited, waited, then told to go get my tests run, then come back--waited some more, then was "given" maybe 3 minutes. I walked out, was asked to schedule my next appointment, and bluntly told them to get my records in order and that they need to become more mindful of their patients and their patient's time. Found another RA Doctor, and have never had to wait more than 5 minutes!
I used to think of Arthritis as an old peoples disease but I soon changed my mind when I started feeling the effects of Osteoarthritis in my 40's and then in my 50's came Rheumatoid Arthritis. I remember my Granny and Grandpa talking about having miseries in their bones and can recall hearing the word Rheumatitis. Of course back then I had no idea what they were referring to and thinking back now, they really weren't that old either. Then it was my Mom, Aunt and Uncle who talked about aching pains in their joints and I watched how the disease progressed as they aged. Their hands looking deformed and pain in their joints every day but they still kept on going and did what needed to be done. Now at 61 years old and the only relative left is my Mom's sister at 88, I have to marvel at how they persevered through the years and didn't let the pain and anguish keep them down. So I can see a future for myself even though my body fights against my will most days. I just pray and say , if they could do it then so can I.
I've learned I don't like or trust RA. I learned that being healthy, very active, nutritionally up to date, isn't going to stop RA from setting in and changing your whole life. I've learned naps are good and stress & fatique are the enemies. I've learned to find doctors I trust, and that trust me! this is very important. Most of all, I've learned to talk to others that have RA, to see how they live one day at a time.... internet friends are the best because there seems to be more of a level of honesty - less hiding the realities of living with RA. A saying that comes to mind here is - when you're looking good isn't looking so good, maybe it's time to change. In person, friends want to minimize the results of RA, and those without it, want to minimize MY abilities and inabilities of living with RA - get up and get busy, you're life is waiting.... stuff like that. I've learned to say "no thanks, I'd rather not go today".... and not feel bad. And, this is big, I've learned to talk about my RA, not hide it and me away like it's something to be ashamed of. Laurie
Wow! I thought I was doing great with my RA, until I went dress shopping! I will turn 48 in June, was diagnosed with RA in 2005, and am relatively pain free/symptom free (I will not say that I am in remission by no means--I have my days!). While I was dress shopping for my 30th High School Reunion, I found some beautiful, sexy dresses, but that danged back zipper! I had pulled about 20 different dresses (not all for the Reunion), but a lot of them had back zippers. I could get the zipper up part way, then stretch over and back to get it up a little further, and sometimes get the zipper all the way up; but there were many that I just couldn't close. Thank goodness for the assistance of the store personnel! My dilemna is I live by myself, and if I struggle in a store, what am I going to do at home?! I just didn't realize that my RA had restricted some of my "necessary" movement. There were a couple of moments in the dressing room that I did want to cry due to my RA because I couldn't zip a dress--but I didn't. It's going to hurt, a lot, to zip some of those dresses I did purchase; but dang it, RA doesn't rule my life! I still need one more outfit for the Reunion, but I rule my life, not the other way around! The search begins for a simplistic and easy tool to help me zip those dresses that I am going to continue to purchase--no matter what!
I never put stress in the equasion with arthritic pain or increasing arthritic pain. It never entered my mind. As another person commented, no family is without stress of some kind. Having raised six children without a spouse I had my share of stress and continue to endure stress of some sort with them through all their problems even though they are all out of the nest. To alleviate my stress, I use meditation, not medication. I find my faith and prayers to be very helpful. Although I am on medication for my arthritis, I believe now that upon hearing about stress being connected to adding pain to arthritis, my meditation must be just as powerful as my medication in helping my condition, for I have been told by my doctor at my last visit to cut my medication in half because my blood test came back with good results.
While being diagnosed with RA and possibly Fibromyalgia I have searched the internet for information on Arthritis. I found the Arthritis Foundation website and HealthCentral.com among other sites. I have been educated by the information posted and shared by experts and other patients. I am learning that arthritis is a disease that we can learn to manage and there is hope of living a full life even if challenges are encountered. I have also learned that individually we can help spread information and become advocates for the disease. So many people have misconceptions about arthritis and the people that are affected by it.
Martilla
I've learned that there is a lot that I can learn. And a lot that I don't know. I had no idea that this disease was waiting (with teeth!) for me, but I have a stick - my meds, my doctor, my family and friends, to keep this dog at bay. And maybe we can train it to heel. It may not be my favorite pet, but I seem to be stuck with it - so by god, I will make it listen if I can! I can't always discipline it, sometimes I need to cajole and ply it with treats, rest, ice and heat, but whatever it takes, we get through each day.
I've learned there is a community out there, just like me, trying every day to make their way with their own unruly companion.
I learned a lot through Arthritis Awareness Month, but the one thing that really suprised me was what I learned about myself. I learned that I have a voice. I have the ability to educate. I can speak up and help people to understand that this is a huge problem facing society.
I learned that for me, a month of awareness could change a life.
I am grateful for arthritis websites, such as Health Central, where I can find current information on RA, ask questions regarding the illness and share my experiences with others. I don't want to burden my friends and family with my aches and pains, my fears and depression. Most people really don't understand the full nature of the illness. When I tell people I have RA the typical response involves which knee hurts and is it worse when it rains! So I have learned that it is much more productive to share my feelings on a RA website rather than go into an explanation on autoimmune illnesses and the all the side effects from RA. I don't want to be that person that goes on and on about their aches and pains! To me, RA means right attitude and I hope to be a positive role model for RA.
Reading all the Awareness month posts has reaffirmed something I have noticed for quite some time. We are all affected differently by RA. Some have rough mornings, some hate evenings. Some take no pain meds, some take handfuls of narcotics. Some have replacement joints, others can still jog. RA is as different in each of us as we are different from each other. And yet it is a catalyst to bring us together, an awful thing we share in common that binds us together as good friends online. Sites like RA Central are an oasis for us, we can share with and care for others that have what we have! We GET each other! No one can understand what we go through without having RA. Its a terrible thing to have, but its also the thing that brought us together. I think we all have learned some lessons reading about each others private lives. And I like to think we have all grown a bit closer while we observed Awareness Month.
For someone who may hold some kind of longevity record for having had non-Juvenile RA (at least 54 years), I really didn’t know much until the days of Google and RA web sites. I never knew anyone with RA until recently, and they were no better informed than I. Most of my doctors didn’t tell me anything (chances are they didn’t know much, either) and I just blithely followed along, taking what meds were given to me and accepting the surgeries when the pain and disability became intolerable.
This past week, I learned the hard way, sans Google, that the infections I am prone to from the biologics can be more life-threatening than infected fingers, toes, and surgery sites. My enjoyment of the first warm week of spring in New York State was thwarted by an infection, described alternately (by docs and nurses) as gastroenteritis, out-of-control diarrhea, possible C-DIF, and (by me) as “death by poop.” I am basically upbeat and fearless at 78, but I never envisioned the scenario of “pooping myself to death.” I guess there’s not a lot I can do to forestall a recurrence, but I survived this time.
Trigger? antibiotics! Cure? antibiotics, of course!
Hello 54yearswithRA! What an awful ordeal for you. I am so sorry that you were so sick. It is so difficult to stay upbeat when you are in pain all the time anyway, but to add the "death by poop" sucker punch...well...that is just uncalled for! I hope you are feeling better now. Life through medications/chemistry! Take care of YOU and GET WELL SOON!!! :)
As a patient with Ankylosing Spondylitis, a form of autoimmune arthritis, life is hard to live. It involves pain, fatigue, guilt, and a lot of other stuff too negative to mention. I made a pledge after I was diagnosed to make this negative into a positive by working as a Health Activist, so for Arthritis month I teamed with friends to run the largest AS awareness campaign to date. It was amazing to see the community come together to support each other and to get the chance to teach others about AS. Sadly, 3 weeks into the project something happened that changed my world completely. Let's just say someone showed me why trust needs to be earned. It broke my heart to go through the whole "life's not fair" routine again, but it also did something good. It made me proud to know that I was worthy of trust, and it reminded me that living life has its risks...I could get hit by a car walking to the park, I could drown drinking a glass of water, I could even have my trust in a friend shattered by backstabbing, but at least I am LIVING. All the pain, the sorrow, the hurt, it is all worth it as long as I can LIVE. I will live for the love, the compassion, the good, for the butterfly kisses and hugs, for acceptance and understanding. Arthritis month reminded me that life might hurt, but you have to know pain to appreciate the days you dont hurt. Sometimes knowing the bad makes the good so much better.
I am really glad to meet you and read your comment. Some days are worse than others, for whatever reasons, and it's hard to keep one's resolve to enjoy life IN SPITE OF! You have a marvelous attitude, and that, sometimes, is all we have. If we just don't all have our bad days and weeks at the same time, maybe we can keep inspiring each other.
It is so nice to "meet" you too! Feel free to add me as a friend on facebook...name is Kelly Christal Johnston. I know how hard it is to live this life, but I also know that having a negative attitude only makes things worse...so I *try* to turn all the negatives into positives, even though it proves hard work, especially on bad days. So may your bad days be short so that you can enjoy the good ones! Take care, Kelly
What I learned during National Arthritis Awareness Month that surprised me was that I'm not crazy; I'm not imagining things; and that the pain, stiffness and exhaustion isn't all in my head - that I have Psoriatic Arthritis. I learned that someone with PsA can wake up one morning with ankles that don't work and can rapidly go downhill from there to involve their feet, hands and back. I learned that there are wonderful, supportive people in my life and in support groups online. I learned that I'm not alone. I learned that PsA will be with me on my journey through life, but doesn't need to BE my life or define who I am. I learned that there is hope.
What I have learned is that there are so many of us out there and that we can all come here and share and help each other. I have learned that I am not alone in my battle with RA. I have wonderful people here to talk to and learn from. We are all in this together. This is a very, very powerful thing for me. We can all gain strength from each other. Love You All! 
what has surprised me about RA is a very horrible disease but on the other hand it can make you pick your self up an find things about yourself that you never knew was there RA teaches you that you can adapt to life changes we may have to do things different or slower then the other people but we can do it and get it done yes we have our mommets of crying an feeling down then we have our mommets of roaring like a lyon it has changed me on how i look at other people with other diseases an having RA is still a disease that is stuck in a closet way back in the corner some where an the word needs to get out for me RA has stopped my clock or put it in slow motion seeing the simple things in life that we take for granted an that im not alone an the suport of so many people with this disease is on going but what really surprises me is the doctors on how the go about treating people with the signs of RA at this day an age
Since my 8 year old daughter was diagnosed with Juvenile Arthritis in 2010, I have read everything I can on this horrible, debilitating disease. Even though I knew it was a leading cause of disability in the U.S., I did not know it IS the leading cause of disability in the U.S. The data is broken down even further, for me to grasp the magnitude of the implications. Two-thirds are under age 65. Even I didn't know that. It is not just a disease of old age. This is crucial to get across to others, as many people are shocked and dismayed that my 6 year old was diagnosed with it. I learned that one for every smoker in the U.S. has Arthritis, and one for every American with a tatoo. And I know a lot of people with tatoos. I also learned that 35 million people died in WWI, but there are 50 million Americans with Arthritis, so Arthritis trumps that too. Unbelievable. This all comes out to 1 in 5 Americans who suffer from this disease. We cannot keep it to ourselves. We must spread the word for better awareness. Understanding that there are different types of Arthritis, and Arthritis related diseases leads to much better outcomes. Someone once said that knowledge is power. Let's use this knowledge for power, against Arthritis, to stop this disease from any more damage and destruction that it brings.
K.
My name is Peggy. I was diagnosed with RA July 27 2011. I was on FB looking for support groups and me my RABFF Brigid. She has had RA for over 3 years. We chatted for four hours, on chat then phone. She lives on the East Coast and I live on the West Coast. We started Squeaky Joints on FB 9/11/11. We now have 466 members from all over the world. We met for the first time May 17th for her AF Walk in Ct. She was the embassitor this year. We spoke at the Walk and work with the Arthritis Foundation. She is the gift from RA. We have Squeaky Joint bracelets and T shirts. We have walk teams all over the country under our name. We raised several thousand dollars this year. We participated in WADD, with a power point presentaion to help parents talk to their kids dealing with an Auto Immune Disease. We are spreading the word and educating people that you have control over how you react to RA. We started a list of good Rheumologists all over the country people can seek out. We blog and post in our group and others daily. We have a family of Squeakers now. www.squeakj.com
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The most important thing I have learned is that those of us with autoimmune arthritis may have different symptoms and responses to medication, but we all have the same life challenges. We all experience pain and fatigue, we all experience the fear that comes with the diagnosis, and we all look forward to the time we will get our lives back. We are all in this together. We need to support each other, and we need to raise awareness of RA, Lupus, Fibromyalgia, and the other related life-changing illnesses. We must advocate for ourselves.