Jodi McKee

rheumatoid arthritis

Ainslie

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Name: Ainslie

Location: Nutley, NJ

Age: 29

Diagnosed with Rheumatoid Arthritis at age 26

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1. How has your condition affected you?  Living with RA has impacted my life in many ways, both positive and negative. While I have had to give up some things that I used to love to do, I have gained a greater appreciation of myself and respect for my body. I am much more attune to my body, I eat healthy, and I maintain an active lifestyle though I am conscious of my limits. I have met some amazing people and made some wonderful friends through RA. I have become connected to the RA world here in New York and I try to stay informed and keep up with research, news, and treatment options. I am also not shy about talking about my condition and I have taken several opportunities, both formally and informally, to be an ambassador for RA. I feel that the more I talk about my experience and share my RA story, the more people will be aware of RA and the realities of autoimmune diseases.

2. What would you like for other people to know about your condition?  One of the biggest challenges of an autoimmune disease is that it is an invisible illness. While I look young and healthy, I am not always able to do things. It is especially difficult living in a fast-paced and aggressive city like New York. Having RA has made me much more aware of invisible illnesses and I try to be conscientious of those around me. Certainly for me the worst thing is being bumped or jostled on the crowded sidewalks. There have been times when I have been hit with a purse or a passing shoulder and this has sent me into a flare that can last several days. I always try to be aware of those around me because, aside from my own protection, every fifth person is dealing with some form of arthritis.

3. What would you like to tell someone who is recently diagnosed with your condition?

It gets better. Trust me.

I lived with symptoms of RA for about six years before I was finally diagnosed. I had X-rays, tried insoles in my shoes, saw different doctors until I finally met a doctor who truly listened to me. When she said to me, "I know what this is and I am going to help you" it was such a turning point in my life, a glimmer of light at the end of a long, dark tunnel. Getting that diagnosis really gave me hope. Knowing what it was that I was dealing with allowed me and my doctor to establish a course of treatment and work towards our goal of getting me back on my feet – literally and figuratively. Many people say that being diagnosed was a terrifying moment for them. But for me it was hopeful and almost liberating. 

In terms of treatment, be sure to consider all of your options and don't be afraid to try new things. There are so many options available – both drug treatments and natural supplemental options – and so it is possible to maintain a life with RA that is free of disability and joint deformity. It is very important to establish a balanced course of treatment, so find the right drug cocktail and combine that with eating well, seeing your rheumatologist regularly, and then stay active and just keep moving!

Always remember that RA, or any chronic illness, does not define you but becomes a part of who you are. Once you can accept it for what it is, you will be able to move forward and learn to live with it. 

Thanks so much Ainslie!!

RA Guy

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Name: RA Guy

Location: United States and Bolivia, South America

Age: 40

Diagnosed with rheumatoid arthritis at age 32. (Symptoms started at age 29.)

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How has your condition affected you? I'm at a good place right now, and can definitely say that my condition has changed me for the better...although this hasn't always been the case. I've learned the beauty of slowing down, of going out to breathe fresh air, and of taking nothing for granted. I've also learned that so many people are there to help me and support me when I need it, and that counts for a lot. I'm in no way trying to underestimate the effect that the pain and disability has had on my life, which has been serious indeed...but as with anything else, it comes down to staying positive, and focusing on what I can control. I used to yearn for the life I might have had, had it not been for my rheumatoid arthritis...but I've since learned to appreciate the stronger person that I've become due to the health challenges that I face on a regular basis, and wouldn't change a thing.

What would you like for other people to know about your condition? I'm not a patient who suffers from rheumatoid arthritis. I'm a person who LIVES with rheumatoid arthritis.

What would you like to tell someone who is recently diagnosed with your condition? Things will definitely change more than you can imagine, and the pain will always be there...but with the right mindset and continued movement, there is a way to continue to live a happy and productive life. Use every challenge you encounter as an opportunity to learn something new about yourself. And always, always, always look on the bright side of things. It may not be easy, but it will be possible.

RA Guy’s Favorite Quote: "Go confidently in the direction of your dreams. Live the life you have imagined." -Henry David Thoreau

RA Guy’s Blog: www.rheumatoidarthritisguy.com

Megan

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Name: Megan

Location: Ottawa, ON

Age: 37

Diagnosed with Juvenile Rheumatoid Arthritis at age 16

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How has your condition affected you? Significantly and every day would describe how I have been impacted by my RA. I have had a knee scope and two shoulder replacements. My shoulder disintegrated before my eyes, and I now beep going through airports. A couple of sentences cannot do justice to the impact joint replacement has had on my life.

There hasn't been a day in my 21 years living with it that I haven't thought about my RA. Can I do this? How much energy do I have? How sore will I be tomorrow? What is the tradeoff? It's only now that I have finally found a drug that works for me, am I thinking less about what I can do and focusing more on just doing it. It's a different struggle, and I am happier to face these challenges. But I still think about my RA every day.

What would you like for other people to know about your condition? Living with a chronic disease is a roller coaster. From one hour, day, year to the next. My emotions have ranged from rage to despair, hope to fear, joy to misery, jealousy to confident, exhausted to elated. It is emotionally and physically exhausting to have a chronic disease. My ability to care for myself and others has ranged from not being able to dress myself, comb my hair or walk to school, to being able to run a 5K race with energy and smiles to spare. I have learned, rather painfully, that there are limits your body puts on you, and there are limits you put on yourself. Only time, trial and error will help align what you want to do with what your body is willing or able to do.

What would you like to tell someone who is recently diagnosed with RA/JRA? Reach out and connect - - there are others in your local community and online who truly understand your struggles and triumphs. I took a longer road reaching out to the RA community, but I have felt nothing but support from everyone I know in the online community. Trust your doctors and follow your treatment  plan - to start. Over time, you will come to know your disease better and be able to make more informed choices based on what is best for you. Research your disease, learn everything you can - be an expert so you can educate others. Eat well and get lots of sleep. Share your struggles with others - family and friends want to help, they just need you to articulate what you need.

Megan's favorite quote: "What doesn't kill you, makes you stronger."

Megan's blog:http://sticks-and-stones-blog.blogspot.ca/

Thank you so much for sharing your story, Megan!

Margery

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Name: Margery

Location: DeWitt, NY

Age: 53

Diagnosed with Rheumatoid Arthritis and Sjogren's Syndrome at age 50.

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How have your conditions affected you? There are days when I forget about the RA and try to do something that used to be doable (such as walking outside in 90-degree heat, or helping to clear a hiking trail at our daughter's camp), and then suffer for days afterwards. Sometimes, my husband and daughter don't want me to come along on an activity because I slow them down.

Adina

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Name: Adina

Location: Los Angeles, CA

Age: 30

Diagnosed with Rheumatoid Arthritis at age 29 and Lupus at age 30

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How have your conditions affected you? When I first found out, I went numb; I shut down emotionally and physically. For weeks I couldn't feel, taste or smell. I was in a haze; angry and ashamed. It took me a while to share the news with my family. In the early days of learning to live with this, I was forced to modify my work schedule and social life; I just couldn't keep up. Living with this has changed my lifestyle and how I do things, but not what I do or who I am. It forced me to re-evaluate my priorities and dreams, but never abandon them. It has made me look deeper inside and see what kind of person I am and how I deal with my challenges. I never gave up the things I love; I'm more dedicated to my yoga practice now than ever. I believe it keeps my body healthy and my mind strong. Every day is a test of patience, and I never realized my strength and perseverance until now. I've learned to embrace the challenges and find the beauty in it. This has taught me to be kinder to myself.

Brian

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Name: Brian

Location: Concord, CA

Age: 47

Diagnosed with Rheumatoid Arthritis and Degenerative Spondylolisthesis at age 38

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How has your condition impacted you?  The greatest impact was the loss of a 20+ year career as a Union Ironworker. I loved being part of building the skyline of the San Francisco Bay Area. Going from a strong independent young man and sole provider for my family to my wife having to dress me in a matter of weeks of my first RA flare was difficulat and confusing. Unfortunately, depression and multiple back surgeries have made the road very difficult and sometimes the feeling of any sense of normalcy will be difficult for me to ever achieve again. My wife and two children have been my greatest support system and psychologists over these years. Before my diagnosis, I was building our home. Then, when I got ill, my closest friends stepped up and finished our dream for us. They have also been there for us over the years with love and support.

Lori

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Name: Lori
Location: Ronkonkoma, NY
Age: 44
Diagnosed with Rheumatoid Arthritis in 2001.  Also suffers from Fibromyalgia.

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How has your condition impacted you?  Professionally, it has taken away the ability to work full-time which has resulted in my giving up a fairly well-paying job for part-time work.  Because I am limited in energy, focus and physical ability it has led me to spend my time on the things that matter to my heart. Where I once worked in “Corporate America”, I now work at Non-Profit Agencies. Working with my church’s Food Pantry and The Foundation for Sight and Sound has allowed me to use my professional talents for people who need it the most. Also, it’s NOT 9-5, so I can work as my health permits.




Personally, it has highlighted how amazing my family is. When I let go of control of how everything gets done and allow my son, daughter or husband to help in their own way, they can be part of the solution. When my son was only 12, he helped give me injections.  My daughter travels with me and helps me with all the crazy plans I make.  My husband does dishes and shopping and ANYTHING he can think of. Empowering them makes us all feel better.
Finally, this condition does not fit my personality. It is painful and I am not one to wallow or “give in” when my body wants to stop. I am still not sure how to deal with it all. It is a continual lesson in acceptance and it has made me look at how hard I am on myself. No one expects as much from me as I do.
The impact on my life is a moving target but so far, I’m still taking shots!
What would you want people to know about your condition? Apparently, not much - It has taken me years to talk about what goes on in my body and when it does come out I am overwhelmed with worry about letting people down.  Having said that - I want other people dealing with RA and/or fibromyalgia to know they can talk to me about what they are going through. Some of the greatest healing can come from sharing.  
What would you want to tell someone who is newly diagnosed with your condition? Try and be kind to yourself. There is only so much you can do to feel normal. Keep changing doctors until you find someone who shares your vision for your future health. Whenever I am faced with a new barrier – a new joint inflamed, an existing treatment stops working, a new surgery becomes necessary – I fight with all my strength to get back to “normal”, but if the fight falls short of the mark, I’ve learned that by accepting the situation a new possibility will open up. The thoughts in my stubborn brain will change and answers will present themselves in ways that I could not have been imagined.
Lori's favorite quote:  "Do what you can, with what you have, where you are." -- Theodore Roosevelt 
Thank you so much Lori!  

Michelle

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Michelle
Mishawaka, IN
Diagnosed with Juvenile Rheumatoid Arthritis at age 15


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How has your condition impacted you?  I was 15 to 16 years old when I found out I have Juvenile Rheumatoid Arthritis.  At first, I didn't know what to think, how to feel, or what to do.  I didn't feel "sick" so it was confusing to me.  I went to Riley Children's Hospital in Indianapolis for the pain, stiffness, and swelling I had in my left knee and in my right pointer finger.  Slowly, through the years, it started to affect me in different joints.  There were so many days I would just sit and cry.  There was nothing I could do but cry.  I felt very alone.  I lost two jobs because of my disease, I lost friends, and I lost my teen years.  Sometimes, I still wonder how I got out of bed each day.  However, now that I am responding well to medication, I spend most of my time symptom free.  It's been a long road to get me here, but I know it's not over.  I just thank my family for being here and for a husband who doesn't get it all, but tries so very hard to.  I do believe this has made me a stronger person and more compassionate towards others.

What would you like for other people to know about RA?  Just because you don't look sick or act sick every day doesn't mean that you are healthy.  I want everyone to know that.  Be compassionate towards others because you never know what they are battling.


What would you want to tell someone who is newly diagnosed with RA?  I want them to know that it's you and RA.  It's only the two of you.  It's best to just accept it.  It's hard not to think, "Why me?", but it's best to remember that things could always be much worse.  You are the only one who can make yourself feel better.  You'll be just fine . . . even on days when it doesn't feel like it.  There will be days that you struggle.  You will feel helpless at times.  You will experience a period of grief.  However, there is a world of people out there who understand the pain.  It's best to have a great doctor with great nurses.  Also, family and friends will pull you through anything.  It's best to be patient, say your prayers, and realize that you are not alone!

Extra thanks to Michelle for meeting me on a very cold day in December for this photo shoot and then patiently waiting for the July/August issue of Arthritis Today magazine to come out before seeing her portrait on this site.  Thank you Michelle!

Katherine

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Katherine
New York City
Diagnosed with Rheumatoid Arthritis at age 24

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How has your condition impacted you?  Honestly, I feel that RA hasn't impacted me as much as you may think.  I am still able to do the majority of the things I love.  When I was first diagnosed, learning that I couldn't go out drinking with my friends was quite disturbing.  At 24, that was what we did on weekends!  I've since adjusted my social life and am very happy.

What would you like other people to know about Rheumatoid Arthritis?  Most people associate Rheumatoid Arthritis (RA) with osteoarthritis, stating that, "Oh, my Grandma has that!" when you mention you have RA.  I'd like for there to be greater awareness of who is affected by RA and how it differs from other forms of arthritis.

What would you want to tell someone who is recently diagnosed with RA? I'd like to tell them not to read the information they find online.  But, I know that they will.  So, if you have to look online for info, also look for unique voices and bloggers talking about life with RA.  I've found a great group of young women in NYC all living with RA who have not let the disease change their lives.  Also, remember that the medical treatments have changed greatly in recent years, so you won't necessarily end up as an old lady with crippled fingers!

A special thanks to Katherine for enduring the freezing cold weather last winter for this photo shoot and for patiently waiting for the July/August issue of Arthritis Today magazine to come out before seeing her portrait on this site.  Thanks Kat!!

Leslie

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Leslie

Ann Arbor, Michigan
Diagnosed with Lupus and Rheumatoid Arthritis at age 22

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How has your condition affected you?  My illnesses have completely changed my life.  I went from being a carefree 22 year old, relishing the promise of graduate school, to having my world completely fall apart around me.  I felt like a spectator in my own life.  But as time has gone on, things have gotten a bit easier.  Mainly, I have a lot of pain and fatigue, although lupus has a broad constellation of symptoms; nausea, dizziness, headaches - basically it makes me feel like I've been hit by a truck and am plastered against a wall.  Having these illnesses has made me have to re-evaluate my priorities.  It has made me question a lot of things about the world, but it has also forced me to learn about myself, just like the title of my blog suggests, illness has brought me closer to myself.     
 
What would you like for other people to know about your condition?  Just because I don't look sick doesn't mean I'm healthy or feel good.  I think that's a huge misconception. 

What would you like to tell someone who was recently diagnosed with your condition? 
I would say that even if they can't see it now, there is hope.  I never thought I would get to a point where my life wouldn't be totally preoccupied by illness.  But learning to manage and know your limits are key.  Learn to say no.  Ask for help.  Understand that you are your best advocate when navigating the medical establishment.   

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Please take a moment to check out Leslie's great blog, Getting Closer to Myself.
Thank you Leslie!

Katy

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Katy
Noblesville, IN
Diagnosed with Rheumatoid Arthritis at age 30.
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How has your condition affected you? My condition has affected me in several ways.  The worst part of all of this for me was waiting for a diagnosis.  I feared that I had a deadly disease that would rob me of my opportunity to live a long and full life with the man that I love and our beautiful children. I have resolved to never take my time with them for granted.  I have also become more aware of toxins in our homes.  I have tried to shift towards buying organic food and green cleaning products, though the strain on our budget is difficult.  I am truly less energetic than I used to be, which is far more frustrating than the constant pain in my hands and feet.  I feel that despite great ambitions for my life,  I am somewhat limited by the constant and overwhelming fatigue.  This makes me sad or angry more often than I would like to admit.

What would you like for other people to know about Rheumatoid Arthritis? People should know that having Rheumatoid Arthritis is more than pain in your joints.  It is experiencing all of the feelings that I described and more. It is nearly invisible to an outsider, but the pain and fatigue are real and intense.

What would you like to tell someone who was recently diagnosed with Rheumatoid Arthritis?  If someone was recently diagnosed with an autoimmune disease, I would tell them to always look for the silver lining in any bad situation.  Although it is hard to believe, having RA has had a positive effect on my life in some ways.  My husband and I have grown closer after my diagnosis.  I feel overwhelming love and gratitude when he steps up to the plate, when I am too tired to handle something.  I cherish every moment with him and our children.  I have become a better mother by being very aware of my children's nutrition, with the hope of preventing them from developing an autoimmune disease.  I have been a better friend by providing support to my other friends with similar conditions.  When I am sad, I try to focus on these things and spoil myself with my favorite coffee, of course!

Thank you so much Katy!

Jacqueline

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Jacqueline
Long Island, NY
Diagnosed with Rheumatoid Arthritis at age 29
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How has your condition affected you?  After giving birth to my son 3 years ago, my feet were feeling slightly stiff and uncomfortable.  The stiff feeling never went away and, in fact, slowly got worse.  I wouldn't say I ignored it, but I almost got used to the discomfort, thinking I was just having normal body aches.


Last year, it started to become significantly worse and I went to my Primary Care Physician (PCP), who told me that it was simply some tendonitis I was experiencing after a childhood of being active.  That sounded okay and I went with it.  I had a neck injury from a past car accident, and attributed a lot of my pain to that as well.  In the past year, my symptoms progressed and spread to my hands and knees.  My feet got so stiff that I couldn't walk in the morning without cracking and popping them at the joints.

I finally went past my PCP and went straight to a Rheumatologist.  I was immediately diagnosed with Rheumatoid Arthritis.  I was more emotional about it than I excpected.  I guess hearing that you have a life-long disease is hard to swallow no matter what it is.  I was told I needed to begin Methotrexate right away.  The Rheumatologist ran down a huge list of scary side effects.  But it is necessary and effective in stopping the progression of RA.  I haven't been able to begin the treatment yet though, because a few months ago I was given a live virus vaccine.  In the meantime, they have me on Prednisone.  It is helping a little, but making me gain weight quickly.  In fact, I was worried about my picture for this project because of the puffiness of my face!

I am in a great deal of pain, and can now only sleep for about an hour at a time before the stiffness and pain wakes me up.  I am a mother and work full time and it honestly makes a lot of my days a struggle to get through.  I am hopeful that the treatment will turn this all around for me.  I am lucky to have the love of my family to help me through each day.

What would you like for other people to know about Rheumatoid Arthritis?  I think the name of the disease is misleading for most.  Although our joints are affected and become arthritic, the disease itself is an autoimmune disorder.  It is not a joint disorder like most believe; it is our immune system losing the ability to identify the difference between the good and bad things in our bodies, so it begins to attack everything.  I told my family to all please read up on this disease, because I feel like they must think I am nuts when I tell them I am having a bad day and feel miserable, when realistically, I look just fine.  I think it has been a lesson to me to not assume that you understand another person's struggles just by looking at them.  There could be a quiet struggle underneath that they are fighting every day, which is exactly the situation for most people with an autoimmune disorder.

What would you want to tell someone who was recently diagnosed with RA?  Well, I am one of those recently diagnosed people, and at this point, still live with severe pain and sleepless nights.  Turning to others who have RA has really helped me understand that the emotions I am feeling are normal, and that there is definitely a light at the end of the tunnel.   So many live with this every day, and so many continue to live normal, comfortable lives.  I look forward to getting to that point.  I continue to research every day so that I can make sure I am doing everything I can to help myself and others who have RA.

Thanks so much Jackie!



Kelly

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Kelly
Drexel Hill, PA
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How has your condition impacted you?  I was diagnosed with Grave’s disease when I was 30.  At the time my endocrinologist told me that having one autoimmune disease opens the door for other autoimmune diseases to develop.  I didn’t take that information too seriously at the time.   Ten years later I’m managing 5 diseases.  

Rheumatoid arthritis is usually my main health concern, but all of the diseases can kick my butt from time to time.  It’s not always easy to manage multiple prescriptions and doctors appointments, along with daily life especially when joint pain and fatigue make simple things like walking and driving difficult. I had to learn how to rest and be kind to myself.  The hardest thing has been realizing that I need to ask for help now and again.  I still struggle with that the most.
 
When I was diagnosed with Rheumatoid Arthritis in my late 30’s I thought it was the end of the world.  Now I know it’s just a different way of living in the world.  I have a good life even though it isn’t the life I envisioned and it did take me a while to accept that.


What would you want people to know about your condition?  Whenever someone hears that I have autoimmune diseases they always say, “But you don’t look sick” or “you’re too young to have arthritis”.  I want people to know that having an autoimmune arthritis is different from osteoarthritis.  It can affect people at any age, including childhood.  According to the Arthritis Foundation,  “Rheumatoid Arthritis  affects 1.3 million Americans. Currently, the cause of RA is unknown, although there are several theories. And while there is no cure, it is easier than ever to control RA through the use of new drugs, exercise, joint protection techniques and self-management techniques. While there is no good time to have rheumatoid arthritis, advancements in research and drug development mean that more people with RA are living happier, healthier and more fulfilling lives.” 


There is a lot of information out there...some good and some bad.  I’ve joined the Arthritis Foundation and Buckle Me Up! Movement to help spread awareness of autoimmune arthritis disorders like RA & Sjogren’s Syndrome.


What would you want to tell someone who is newly diagnosed with your condition?  It is important to find a doctor that you feel comfortable with and can have open and honest communication.  Don’t be afraid to ask questions about recommended treatments and holistic alternatives. I also recommend seeking out support groups or counseling because managing a non-curable disease can be overwhelming at times.  Know that you are not alone and don’t be afraid to ask for help.


Thank you so much Kelly!

Rob

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Rob
Philadelphia, PA


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How has your condition impacted you?  I have had bilateral knee replacements, elbow replacement, wrist replacement, and finger fusion.  The rheumatoid vasculitis causes inflammation of my arteries.  I was the 10th person in the US to try an autologous stem cell transplant for RA.  No medications have worked for me.  I went onto long term disability in January 2009 - after having the disease for 15 years.

What would you want people to know about your condition?  The body truly does adapt to what you're dealt.  My joints certainly don't work the way normal joints do, but my body has figured out how to move about.  Sure I've been forced to slow down, but this also gives me a chance to enjoy other things that I would have easily missed.  It also improves the sense of humor - it's frustrating to try and fail 26 medications and see my body get progressively worse.  So, I have to improve my sense of humor and short attention span.

What would you want to tell someone who is newly diagnosed with your condition?  Be as aggressive with treatment as possible, regardless of the severity of your disease.  RA only gets more and more non responsive, so the key is to jump all over it from the beginning.  Also, find out as much info as you can about the disease and always ask questions of your doctor.  Don't just accept their answer if you believe otherwise.

Thanks Rob!!